Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: jemma on July 11, 2006, 03:29:34 AM

Title: When 2 thal minors want to have children.
Post by: jemma on July 11, 2006, 03:29:34 AM
Dear Friends,

My husband & I are thal minor.  I have had two pregnancies.  The first one was quite a suprise and i wasnt ready emotionally for all the decisions i had to make.  Everyone in our families told us that we had to terminate if the child had thal major (including my husband) I was devastated and i felt like i was pushed in a corner.  I did my CVS testing and i saw my baby on the screen.  I remember looking at the baby and saying dont worry whatever you have i will still bring you into this world against everyones wishes.  I waited 10 days for the results........The baby had no thal (at all!!!) and it was a girl.  April 24th 2003 my beautiful baby was born and i thank my lucky stars that she was healthier than us!!!!!!

After her birth i started researching Thal Major.  I used the internet, books and i went to the Thal unit at Monash Medical centre.  We looked into PGD testing (like IVF but they test the embryos before implantation) however this was a costly procedure....$8000.00 and  i only get a 25% chance f falling pregnant.  At the momment i have a 75% chance of having a healthy child.  We talked about the treatment for thal major children and life expectancy and an insight to what it would be like to raise a thal major child.  After 2 years of research i have decided that i will terminate the pregnancy if i was carrying a thal major child.

The second time i fell pregnant i was sick with worry.  I would cry nearly every night and i prayed to God that he would give me a healthy child so that i didn't have to make the awful decision to terminate.  I went for my CVS test and when they performed the ultrasound the unthikable happened.  My baby had died......They could not locate a heart beat.................  I was in a state of shock...All i could say over and over again was NO NO NO.....................  I came home and the next day i went to the hospital where they performed a D&C. :wah My little baby had died.....  :wah  I came home and i just wanted to break things. I was so angry.  I asked to get my baby's remains and i buried them in my garden.  I feel as if God had taken him away from me to spare me from making that awful decision.  I believe my little baby whom i named Ethan had Thal major.

Today i am trying again.  I dont think deciding to terminate your child is ever an easy decision (well not for me anyway) All i can say is that i know i have made an informed decision.  I read another post where a young woman had thal major and she wanted children she feel pregnant against her doctors wishes.  She was weak and got very sick when her babies were 26 weeks of gestation.....she died along with her 2 babies.  Having 1 child and being able to fall pregnant is such a big privilige and the best time in my life ....How could i deny this from my child if they have Thal major. :dunno

I want to give my 3 year old daughter a sibling......  i wanted 3 children but because of this we will be happy with 2.  I am taking a gamble,  a huge one.  I never want to terminate a pregnany but i feel that this is the right decision.   

Every time i think about terminating i cry.  I dont know how i will cope with having to make that decision.  My  baby Ethan died on his own and that felt horrible and there was alot of emotional issues that i had to overcome and i am still trying to overcome.  I can t even seem to comprehend how i will feel if i had to make thet decision.   :banghead
Title: Re: When 2 thal minors want to have children.
Post by: §ãJ¡Ð ساجد on July 11, 2006, 07:10:23 AM
Welcome to the site! It's really heartbreaking to hear about your second child!

As you might already know that 2 Thal minor are at 25% risk of having a Thal Major child. So, be optimistic that you have 75% chance of having a non Thal major child!

Furthermore read posts of our valuable member "Miaki" She really is an inspiration for all Thals. that are planning to become parents!

I would personally like to request Miaki (if she's reading this) to help you out in this regard and tell you how she; being a Thal. major and married to a Thal minor/carrier has a wonderful complete family!
Title: Re: When 2 thal minors want to have children.
Post by: Shikha Mitra on July 11, 2006, 08:23:05 AM
Hi

Have you never thought of adoption? Since you are so lucky to have a child of your own, may you could think of adopting a baby and not put yourself again though all the trauma that you went through the last time.
And let me tell you one thing, raising a thal child is never easy. It might put you through even bigger heartaches, desperation and at times totally at a loss.. not to mention, the pain the child will have to go through, even today in 2006.
It needs much more than attitude and acceptance to raise a thal child, whatever said and done.

I have gone through that, so I know. Even after 30 years, the heartaches never seem to go away, no matter how brave I have been .... not to mention all the complications some Thals go through.

So now that you have a beautiful girl of your own,  please do think about adoption.. you could make a wonderful mother to someone who has no one.


Shikha Mitra
Title: Re: When 2 thal minors want to have children.
Post by: jemma on July 11, 2006, 12:58:22 PM
We have thought about adoption however i am worried that i will not love my adopted child as i love my own.  I am also afraid that our families will not accept our adopted child as much as they have accepted and cared for our little girl.

Believe you me i have looked at every posibble way to make our lives a little less complicated. 

I understand that looking after a thal major child would be hard and emotionally heartbreaking and physically draining.  I got a small taste of it when i took my daughter to hospital for a minor procedure and she just screamed in pain.  i was crying with her instead of lending her support and encouragement and then i felt faint that the doctors had to make me go to a different room and sit down as i had gone white and my mother looked after my daughter.  That experience scared the hell out of me as i realised that this would be an every day occurence for my thal major child and myself.  Like any mother i do not want to see my child in pain.

I hope you guys understand me.  I dont believe i am selfish for not wanting to bring a sick child into this world.  I am looking out for my daughter the most as i will be compromising my time with her.  Look i have a 75% chance of having a healthy baby so as i see it the odds are in my favour. IVF is very costly and Adoption....  well i dont trust myself enough to love someone else's child as i love my own...And that would be devastating to the adopted child.  i never want any of my children to feel less important or less loved than the other.

Title: Re: When 2 thal minors want to have children.
Post by: Narendra on July 11, 2006, 02:39:35 PM
Welcome to the site Jemma,

We can understand what you and your family have gone through as many of the members here have some relation with Thalassemia and I know it hurts when we have to go through it.

Have you researched about saving the cord blood when the baby is delivered and doing a transplant (in case the baby is a Thal{Major}). This is something I have seen and I think some other member might be able to shed light on it more.

You are really lucky that you have a little angel of your own in your home. Also, if your daughter's HLA matches with your new born, there is an option of Bone Marrow Transplant(Again, that is a risky procedure, but there are quite a few cases who have done a successful Bone Marrow Transplant)

-Narendra
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on July 11, 2006, 03:38:38 PM
Hi,
I know $8000 is a lot of money but raising a thal child will cost far more than that financially. The long term care costs are a factor and should be considered. That far outweighs the cost of in vitro.

And, please, do not go by odds. 25% may seem like a low probability but this group is full of people that fall into that 25%. I have met people who have three thal majors in their families. Odds mean nothing to them and shouldn't to you. You have to be realistic and realize that there is a good chance of having a major and if you decide to get pregnant you need to be prepared for that possibility.

There is one thing that I feel is the most important factor. You have to consider the child who will have to deal with being a major. If that child asks you why, what will you say? Are you ready to tell a child that has to live with thal that you made the right decision? I know these are blunt questions but anyone willing to risk having a major should be prepared to answer them. I think it would be very good for you to talk to some patients and observe what their lives entail before you make any decision.

I think you will hear a range of thoughts on whether or not it's ok to bring a major into the world. I will not comment on that because that has to be a personal decision but you do have to look at yourself and ask if you are willing to have the strength to be a parent of a major who willingly chose to take that risk. It's a hard question but one that must be asked. If I was in this situation, I would go the in vitro route.
Title: Re: When 2 thal minors want to have children.
Post by: jzd24 on July 12, 2006, 12:52:32 AM
Jemma,
     I am so sorry you lost your baby - what a traumatic experience. Ultimately it is your decision about what to do, but I wanted to tell you about my experience with adoption. I have Thal intermedia which requires transfusions. My husband and I couldn't have children as it turned out, due to problems he had, so we adopted. We have 2 children who are so wonderful. We never think about them not being our biological children - we love them unconditionally. We were lucky to get them as babies. I'm sure you would love adopted children as well, but I understand your desire to have biological children.
      I agree with Andy that $8,000 is not that much considering the high cost of Thal treatment. You, however, can only do what you feel is right for you. Good luck in your decision.   Jean
Title: Re: When 2 thal minors want to have children.
Post by: floWer on July 12, 2006, 05:38:30 AM
Hello Jemma,

My deepest sympathy for your baby Ethan

I placed a similar post on MSN a few years ago.  I think it has some relevance to you and that’s why I feel I need to post it again now.

My first born daughter died for no reason before I could say a proper 'hello'.  I thought I would never want to have another child as the pain of loosing her is so deep.  Although her life was short I will never regret that we decided to have a family. At least we were blessed in loving her, rather than having never known this love at all.

I'm a female in my early thirties living with Thalassaemia Major.

If you ask my mother, she will tell you that she may have had guilt because of  her own insecurities about giving birth to me, but she will not regrets now that I am here.

If you ask my husband, he will tell you I am a blessing to him and not a burden

If you ask my second born daughter, she will not understand what your talking about, as I am simply “Mum” to her and my condition doesn’t even enter into it.

My mother would have deprived my daughter of her life,  if she had decided to deny me mine.

Don't look at your unborn child as a condition, look at s/he as love, life and your child. Our children are our legacy and I can think of no greater pain than to look back in twenty years and wonder what might have been.

Regards

floWer
Victoria – Australia
Title: Re: When 2 thal minors want to have children.
Post by: Miaki on July 12, 2006, 02:56:29 PM
When two thal minor’s want to have a child............interesting.

Why can’t we change the topic to: -   “When two people want to have a child?

A child is created because two people love each other unconditionally. I didn’t realize that having a child with thal major is such a bad thing in today’s society. You could say to yourself but why bring a child into the world to suffer and go through the pain? Good question.

Back in the earlier day’s having a child with thal major was hard, the life span of a thal major baby was difficult to determine. Things have changed from the 60’s and 70’s, we are in 2006 were research into Thalassaemia is becoming world class and here in Australia and of course other parts of the world,  thal major patients have the best of care.

For me Living with thal major really hasn’t been that bad. You might say that I have been one of the lucky patients with no complications and real major health issues. I do have my mother to thank for 1) brining me into this beautiful world we live in and 2) for encouraging me to do things, for showing me that I only have thal major, a condition  – its not the end of the world. Thal major is a condition providing you manage it from day one then your in control of it not it of you.

I have lost many, many friends due to thal in their early 20’s but that was some 15 years ago. Now days we are all encouraged to live a “normal” life – and what is “normal”?

Firstly I was told my life would end by the time I got to my early teens. Now I’m 37yrs old, I was told that I wasn’t able to have a child ….my child will soon be 12yrs old. As a mother you always feel for your child. I can say that my child is what keeps me going on a daily basis. He is my tower of strength. Like myself and Flower there are many thal major patients who have successful jobs, have committed with their partner and have families, travel, and do or have achieved what any normal person have achieved.

Like Flower said in her wonderful post  quote ” Don't look at your unborn child as a condition, look at s/he as love, life and your child. ”

My deepest sympathy for your baby Ethan. I do wish you and your husband the best of luck and I do welcome you to our big virtual family. Please take care and keep in touch.    Miaki


 
Title: Re: When 2 thal minors want to have children.
Post by: jemma on July 13, 2006, 09:51:32 AM
Dear Friends,

The message that i am getting from most people that have been so kind to reply is that if i fell pregnant to a thal major child i should have it.  From what i have understood from Maiki and Flower is that you guys are grateful that your parents bought you into this world and you live your life as a normal person would. Could you garuntee the same for my child?  The topic when 2 thal minor want to have a child? is exactly that.  It is far different from when 2 normal people want to have children......  We are carriers of this genetic condition which could be passed to our children.  So in my eyes there are alot of issues and dilemmas that we needed to address.   I believe in life not being so black & white.  I have thought about my child having complications and possibly dying before i do.  How about if at the age of 20 my child decides that he does not want his pump or his blood transfusions.  Do I watch him die?  How about if my child resents me for bringing s/he into this world when i did have an option not to?

I have a cousin who has Thal major and she describes to condition to me as "I have to struggle to live"  She is 37 and works as a part time teacher and married.  She told me that she did not want to have kids as she did not know how long she would be around for.  She is currently having blood transfusions every week and looking weaker and weaker by the day.

I have heard in Cyprus Thal is a huge epidemic.  Churches wont marry you if you both have thal minor....and apparently even the archbishop has called for the termination of such babies.  Harsh i know but so true.  They say that in 10 years time there may be a thal epidemic in Australia.  However when i spoke to professionals in this field they have told me that more and more people are opting terminating the pregnancy. 

Trust me i do not want to terminate a pregnany on this basis.....but i feel like pushed into the corner.  There is no changing my husbands mind or our families mind!!!!!!!  People have actually called me selfish if i decided to bring this child into the world.  They see it as i saved myself the misery of terminating and gave my child a lifetime of pain.  I have heard the pump is very painful????

I am caught in between....In vitro out of the question as its $8000 for ONE try with only a 25% chance of having a baby.  I hope that i am not coming across as arrogant but i just needed to vent as with everyone i speak to does not wish to hear what i have to say or feel about this......I mean even i dont know where i stand......
Title: Re: When 2 thal minors want to have children.
Post by: AstonDialo on July 13, 2006, 03:38:11 PM
My sincere condolences.

But can I just ask you one thing?
When did you find out that you and your partner were both Thal Minor carriers?
I'm not having a go at you, but surely you would've had a discussion with your partner somewhere along the line before getting married about having kids in the future.


The younger Thal kids today have got a better start in life than what we had back then.
They can get on top of things.
Treatment today is better than what it was 30 odd years ago.
There's stem cell; BMT; oral iron chelators - L1 & ICL670.
Development is normal (Growth, bones, organs)
Screening of blood for viruses.

With us older patients, some of the damage was already present before Desferal even became available in the 80's.
For some it was too late.

When I was born nothing was known about Thal..We were and still are the guinea pigs.
There was no testing to see whether the embryo had thal.
There wasn't any support groups for our parents.
No internet.
There was only what Dr's knew, which wasnt re-assuring.
Dr's werent much of any help.
Doctor's told my mum I wouldn't live to see pass 9 years old.
I'm 34 now.
It was hard for my parents.
I'm the youngest in the family with 2 older siblings whom are both normal.
I guess I'm the lucky one - the chosen one.
My mother didnt want to have another kid after I was diagnosed with Thal.
It was hard for her to see me go thru what i was going through and didnt want to see the same thing happening to the next child if she had gone for another child.
I'm sure she would've liked to have had a 4th child.
I'm shocked to hear that the archbishop approves for the termination of  babies diagnosed with thal...Isn't it a sin?
Who knows what can happen in raising a child in today's world..
I'm not being biased, Whether he/she has Thal and leads a normal life, gets married, has 2 kids, and goes on to study medicine at Uni, or if he/she is normal, but hangs around  with the wrong crowd, and becomes a drug addict, and steals to support drug habbit and then ends up in jail.
Both theories are real and are not fictional.

Kind Regards

AD


Title: Re: When 2 thal minors want to have children.
Post by: Miaki on July 13, 2006, 03:51:52 PM
My thoughts are you don’t mess with Mother Nature.
Yes I am very grateful for my mother bringing me into this world; both my parents were and continue to be great parents and grandparents for my child. If my mother aborted her pregnancy I would not have been here today, I would not have achieved what I have achieved today and I would not have experienced the most beautiful thing in the world – childbirth.

How can you ask if we are grateful for our parents bringing us into this world and living our life as normal people…we have a disorder not 4 eyes, no arms and are not able to do anything. NORMAL HEALTHY people sometimes have a stroke of bad luck and end up in a wheelchair or dead. Find me somebody that can guarantee you good health, and eat my words.

You say about aborting the child if its thal major – perhaps we should start aborting all thal carriers (they are the ones who start the process) …wow that would kill off half the population.

Like many we all rebel against going to school, parents, and other issues and yes your child might rebel against not using the infusion pump, s/he might also not want to show up for a blood transfusion but trust me that’s all normal. We all rebel against things daily and your child wouldn’t be normal if they didn’t rebel. I rebelled and did the blame thing on my parents. But my mother taught me the most valuable lesson in life (I have actually done a post on this)

Your child will love you and thank you for bringing them into the world. They will thank you for loving them unconditionally and they will be a strong person and you will be the person they will thank.  Each and every one of us is an individual and we can cope with what we can manage. As I mentioned in my previous post I’m 37 yrs old and I have a child, I have life, I work and I do all normal things.

In Cyprus there WAS a huge epidemic but since the churches brought in this law that all couples must be screened for thal trait and if they are positive they must receive counselling and then only then he will marry them. He does not say you must abort.

Yes there “might” be a epidemic in Australia of Sickle Cell Thalassaemia as there is a influx of different nationalities coming into the country and they need to be educated and not only them but I am soon realising that the old school thinkers need to be re-educated in what thalassemia really is and how it effects one.

I do feel for you as you are standing at a cross road and you don’t know which way to go left, right, straight or backwards. Perhaps you could get in contact with some of the patients with thal major and speak to them if they are willing and see what its like. We all deserve a life and nobody should take anything away from nobody.

I do wish you all the best and please vent away as we will vent also. 

Miaki
Title: Re: When 2 thal minors want to have children.
Post by: Kathy11 on July 14, 2006, 12:20:31 AM
Hi  Gemma.

I can sense your fears because 25yrs ago I was in the same predicament,I was pregnant with twins and I wanted to terminate my pregnancy for many reasons.
At that time I was counsel by an older Nurse and she reminded me that all the birth has a purpose therefore it was not my doing and I will be leaving with my conscience everday for the rest of my life.If I think I can do that go ahead if not just go with the flow of life.It was the hardest decission I ever have to make ,I went through with my pregnancy .
My sons are now the pride and joy of my life they are everything any mother would love to have for sons.I still feel guity, that I had the thought of getting rid of them .
I'm so glad I listened to that lady and I weighed the pros and cons.
Final desicion lies with you, your hushand and your needs to do what you both think it's best for your circumstances .bare in mind that we cann't live our lives in fear of" what if"
I hope sharing my experience with you and all on this forum with help you to come to some undestanding and you will make the right choice for your family ,Its not easy, any which way there is a consequence.Good luck and may god guide you in your decission making.regards kathy.
Title: Re: When 2 thal minors want to have children.
Post by: jemma on July 21, 2006, 11:05:09 PM
We found out that we were both Thal minor about a year before i feel pregnant....Sure we discussed the implications but i felt that i had a while before i would fall pregnant so i needed have worried about it at the time.  Yes i know i was very stupid to do this. 
Every time i came into this site i see Lisa Camilleri at the front......she died....she was so young...Why did she die?  How could any parent live and carry on if their child died before them...i know i couldnt and it will just break up our family if it did.

I do not believe in a termination f a pregnancy but if that child has a life long illness with possible complications then i feel that i am sparing them the pain.  I was just looking for a little support cause all this still hurts.

And with terminatiing all thal minor babies???????  What are you on about....  The Cyprus goverment is calling for the termination of Thal major babies as it is costing the community a lot of money to provide the medication for these children.  Of course we should do whatever it takes to help the babies that have come into this world with this condition.

I dont expect anyone to understand where i am coming from unless you have walked a mile imy shoes.  Eveyone lives are different to others with different influences around them.  I understand that the people with Thal major who have responded to me may have different opinions to this and i am sorry if i have offended or hurt anyone.  Its just that this is very difficult for me
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on July 22, 2006, 04:49:35 AM
I would like to correct the implication that the Cypriot government is calling for the termination of thal major babies. That decision is left entirely to the parents. The only requirement by law is premarital testing. Abortion is made available but it is not required.

http://chronicle.com/colloquylive/2003/04/eugenics/

Quote
Before marrying, Cypriots must be tested so that carriers of the disease gene can be identified. They are then offered genetic counseling if they marry, and abortions if a fetus is determined to have the disease. Even though the only requirement is the premarital test, the program has resulted in the near-elimination of new cases of the disease.


As far as Miaki's facetious statement about aborting carriers, she was simply trying to make the point of where do you stop when you start aborting fetuses that are majors.

Some parents do indeed choose to terminate a pregnancy if the child is a major and that has to be their own private decision. As I have said elsewhere in a post, in some places, abortion may be far more humane than allowing a child to be born into a life where NO treatment at all is possible. This is a harsh world and for the poor, it is far more harsh. Bringing a child into a miserable short existence may seem to be the far worse choice for parents who will not be able to afford any care and abortion will be chosen. These parents do not need condemnation. This is a very difficult choice but it is their choice. Even for parents who are in a situation where care is possible, the choice to bring a major into the world may be very difficult. I have had majors tell me they wish their parents had abortions instead of bringing them into life and I have had other majors tell me that their lives are fine. This often depends on what they have experienced in life and for some, the experience has been overwhelmingly negative. Yes, walk a mile in their shoes before passing judgement.

Jemma, you are full of uncertainty on how to proceed and say that in vitro is too expensive for you at this time. I would say the same to you that I would say to any potential parent who has doubts about what is right. Be patient, pray, talk to others and when you are certain what you want to do, then proceed. You are right about Lisa. For her mom to see her die before her was the worst thing that could happen. It as though her own life has ended. Lisa died from a combination of hepatitis C, which destroyed her liver and iron overload that greatly diminshed her heart function. Her mom carries on and even continues to raise money for thalassemia but she has lost both her husband and daughter to thal and the pain she has to live with is immense. Lisa was my best friend and losing her was like losing part of my own life. This is reality. We always have to realize that anyone can die, thal or non-thal. My own "healthy" brother died from a heart attack while my dad was still alive. It is very hard for parents to outlive their own children but it happens often from many causes. To be a parent is to accept this possibility.

Only you can decide when the time is right to try and conceive. Only you can say if you have the strength to deal with having a thal major child. It is a risk through normal conception and you do not believe in terminating the pregnancy, so if you choose to have a child, you must be prepared for this possibility. It takes dedication and lots of love but many parents do raise majors and from these posts you see that many have very happy lives. You have the advantage of living in a country that offers excellent care for thalassemics and that is a big positive. You must weigh all this with your husband and decide when you feel ready to proceed. To be honest, it troubles me that you had such a hard time when your child was in the hospital. I am a parent of five children and have been through near death experiences with one of them due to severe asthma. There is nothing like the feeling of seeing your child taken unconcious aboard a helicopter to be flown to another hospital, while not knowing if the child will still be alive when he gets there. To be a parent, you have to be able to deal with any possibility. I don't want to sound uncaring, but you need to find the inner strength to deal with whatever comes along for the child you have and any future children you may have. That strength is inside you and it is up to you to find it and use it when needed. When you can handle anything that life throws at your child and have the strength to be there for her, you will see that that strength was there inside you all along. You have dealt with terrible things before and survived. Things will not always seem as confusing as they do today and at some point you will wonder what the uncertainty was about. You will make a decision and know that is the right decision.

I wish you all the best. Please remember that you have already been blessed with one child. When you see the positive in your own life, it makes it much easier to deal with whatever challenge life presents next.
Title: Re: When 2 thal minors want to have children.
Post by: mustho on July 23, 2006, 04:51:36 AM
Hi Jemma, its interesting story to hear and at the same time its sad you have lost your second child while they were doing a procedure. I would like to ask you whether they explained you how this child died while doing CVS. As there is always this risk there can be fatalities while doing this procedure either introducing infections or physical injury to fetus. But the incidences’ as far as I know it’s rare. Being a person interested in this area of medicine, I am curious to know whether there was any injury that leads to die this child.

As many of you have said its not an easy decision to make, to go for medically terminate a pregnancy. However as Andy said due to the consequences and burden that thal major kid itself has to go and the concerning family has to undergo. In my opinion it’s a right decision to take, as Miaki said I don’t think by taking such a bold decision we are doing anything against Mother Nature, or rather I feel it’s a decision to take to build a healthy generation.

Many of us thal majors may be the victims of either lack of knowledge of our parents about the technologies and the pathology of thalassemia. Or it may be their own decisions as per either strong beliefs’ or faith. What ever it is, since with the help of medical knowledge there is this chance that we can avoid getting thal majors, I would say it’s a right decision every one should take.
Title: Re: When 2 thal minors want to have children.
Post by: floWer on July 27, 2006, 11:57:59 AM
Hi Jemma,

Firstly I would like to ask you, what was the reason for you to post your story on this forum?  Did you want to meet people with Thalassaemia Major?  Did you want to gain information? Did you wanted understanding and sympathy?  Or did you want people to approve your decision on aborting a baby which has Thal?

I was a little disheartened when I read your post and read your words in RED that you wanted guarantee from Miaki and myself that your child would not hate you from bring them into the world.  I’m obviously not god so how can I possibly guarantee you anything??  I can say I believe your child definitely wouldn’t hate you as you had elected to give you child the precious gift of life.  I don’t envy you your decisions as you obviously don’t have a very supportive partner and family and you also appear to lack convictions and inner strength.  If one day you finally come to understand what we are trying to say to you, and become a positive person then maybe you will find love for yourself.  Maybe you could also find this love and strength for any child that you bring into this world, be they Thal Major, Thal Minor or Non - Thal?

I couldn’t believe that you gleaned something negative from Miaki and my posts.  Did you do this to reinforce a position you have already taken in your heart?  Did it make you feel better from turning our positive post into negatives?  If it did then good on you. You succeeded in upsetting me as you obviously view my life and that of other Thal as somehow inferior to your own “normal” existence.

Miaki is right about changing the subject to 2 people wanting a child.  A child is brought into this world needing unconditional love.  Love has no barriers and no conditions.  Maybe I was blessed that both of my parents didn’t know about their Thal Minor but knowing my parents, I don’t think they would of aborted due to their religious beliefs and strong convictions in the fundamental right to life.

Your comment ‘How about if my child resents me for bringing s/he into this world when I did have an option not to?’  If you raise your child with love and respect then you will not have a child that resents you.  You will not even have a child that questions their condition in a negative way. Children are not dumb, I knew my mother felt guilty sometimes about bringing me into this world, but that guilt is her own insecurity coming through and is definitely not due to anything I have said or done. 

Perhaps instead of planning to have another child, you may need to get counselling on baby Ethan, I have this feeling that you are blaming yourself for even thinking about aborting prior to the babies birth.  Once you get counselling them maybe think about another child.

Yes! Life is a struggle.  Everybody has huge responsibilities these days with family, work, finances and social expectations. Life is a ‘struggle’ for everyone.  Not just people with Thal Major.

Just remember this is a Thal Forum,  a forum for support and to have an open mind to understand everyone’s experience.  So if you want to turn our positive post to a negative to suit your self then do in your own space.  If your looking for someone to condone your decision on aborting a Thal Major baby you will not be getting it from me because, surprise surprise, I just happen to be a person with Thalassaemia Major.

I would just like to finish by thanking my parents for allowing me to be all that I can possibly be,  and for not abandoning my life on the possibility that I may not express due gratitude to them for it later on???  Your children may indeed go through periods where they dislike you for one reason or another Jemma, but letting them be born to express those emotions in the first place would not be one such reason.


Title: Re: When 2 thal minors want to have children.
Post by: Miaki on July 27, 2006, 02:02:33 PM
:clap :clap :clap :clap :clap :clap :clap :clap

And on that note I would like to thank my parents for bringing me into this world and allowing me to be who i am today. I would also like to congratulate all the other parents on this forum for being wonderful carring parents, for their  love and determination and for showing their support on this forum.  . . You should all be proud and we are all proud of you.

 :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers.
Title: Re: When 2 thal minors want to have children.
Post by: §ãJ¡Ð ساجد on July 27, 2006, 03:40:24 PM
I think this is a personal matter and you should not be concerned if someone has an opinion opposite to that of yours.

Some people won't go for another child once they have a Thal-major (or choose the aborting option) while I even know a family that has 4 Thal-majors in a row! When asked they simply reply that the soul had to come so it came and we can't change it. What will happen, will happen as there is no telling what the future holds.
Title: Re: When 2 thal minors want to have children.
Post by: jemma on July 28, 2006, 02:51:27 AM
Dear Everyone,

My reason for posting this note in this forum was to so i could be understood and to read about any one that was faced with the same issue as me.  I did not mean to offend any one or upset anyone but simply writing in here my absolute true thoughts and feelings about this issue.  I could have lied all along.....I could have wrote that yeh your right i am going to give birth to a baby Thal major or minor or no thal.  But this would not have been truthful and i would have lied to myself and to everyone who has read this.

It is against my religion to abort and this is why i am having a very difficult time with this.  When i found out about our circumstance i wanted to have a child regardless...my husband wants me to abort a thal major child...After lots of talks with proffesional and seeking different advice i too decided it is probably best to terminate...I am not a  hard hearted person.  My heart is telling me not to do it and my mind is telling me its for the best.  i have to also respect my husbands wishes as well when making this decision.

I am so scared, afraid, frustrated, angry.  I dont think that a thal major person is any different to me...i think we are all the same and i am glad and happy for you for making the most of life.  And i admire your mothers for bringing you into this world that was her personal decision just as this is my personal decision.
I just wanted to meet people in the same boat as me.... thats all.... to offer me support.

Everyone has different views about different things it dosent mean that one person is right and the other is wrong.

Jemma :hug
Title: Re: When 2 thal minors want to have children.
Post by: jemma on July 28, 2006, 02:55:50 AM
Dear Mustho,

Hi, my baby did not die because of the CVS test.  He died a couple of days before.  But they have told me of the risks but they said it was less than 1%.

Lastly i would like to thank you for your posts it gave me some comfort.

Jemma
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on July 28, 2006, 08:41:49 AM
My reason for posting this note in this forum was to so i could be understood and to read about any one that was faced with the same issue as me.  I did not mean to offend any one or upset anyone but simply writing in here my absolute true thoughts and feelings about this issue.  I could have lied all along.....I could have wrote that yeh your right i am going to give birth to a baby Thal major or minor or no thal.  But this would not have been truthful and i would have lied to myself and to everyone who has read this.

Jemma,

I have followed this thread with some interest because, as Andy mentioned somewhere else, abortion vs lack of care for a thal child is a very real issue in India. But, that's really marginal to my interest. My main interest arose from the fact that I have had hearty conversations with myself when I was 12-16 yrs, and went through some really tough times, on what constituted life and what type of life is worth living and whether it would not be better not to live, rather than live as a thal ...... today, I am 36, over that phase but that phase was tough ....... still, now I believe in lights at the ends of tunnels!!

However, coming back to your point above ...... you really should have gone through the group objectives and posts first before posting, as this is a support forum for thal people. Majority of the people posting here are Thal majors who are living their lives as Thals. For you to come here and wonder whether you should abort or not is very insensitive. You may be posting "your" truth, but you are being insensitive to everyone else on this forum. And, that is what offended Flower and Miaki and I would imagine many others, who have not written back to you. We can only answer your question with our experiences, but that is not the answer (support) that you seek ..... and, the answer that you seek you will not find here because we are the survivors, and we are hearty, happy survivors, in most cases!

Quote
It is against my religion to abort and this is why i am having a very difficult time with this.  When i found out about our circumstance i wanted to have a child regardless...my husband wants me to abort a thal major child...After lots of talks with proffesional and seeking different advice i too decided it is probably best to terminate...I am not a  hard hearted person.  My heart is telling me not to do it and my mind is telling me its for the best.  i have to also respect my husbands wishes as well when making this decision.

I really, really do not understand then why you wish to have another child under the circumstances? You already have a healthy baby. You are being torn apart by whether you want to abort or not, if the child is thal major. You don't want to spend the money on the IVT. Don't you think that you will damage even a "normal" baby with all your stress and anxiety during the pregnancy? And, are you aware that the CVS test is also not 100% accurate? It can give you a false negative - what do you do then? And, if you still want another child, why not adopt as Shikha suggested earlier? And, I can't imagine your husband forcing you to have another child under the circumstances. Maybe, you should talk to some proper counsellors, which we are not. Because, although you say that you have decided to terminate, based on your past posts, it would appear that such a course would still scar you immensely.

Quote
I just wanted to meet people in the same boat as me.... thats all.... to offer me support.
Everyone has different views about different things it dosent mean that one person is right and the other is wrong.

Jemma :hug

And, believe it or not, I fully agree with your last statement.

Take care now,

Poirot
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on July 28, 2006, 08:54:55 AM
In my opinion it’s a right decision to take, as Miaki said I don’t think by taking such a bold decision we are doing anything against Mother Nature, or rather I feel it’s a decision to take to build a healthy generation.

What ever it is, since with the help of medical knowledge there is this chance that we can avoid getting thal majors, I would say it’s a right decision every one should take.


Interesting viewpoints, Mustho.

Where do you draw the line when you start genetic cleansing?

In this specific case, since the Minors are the ones really at fault, shouldn't we start with them, as Miaki posted earlier?

So, here's what I propose, based on your contruct:

1. Test everyone in target communities for the thal gene
2. Everyone with the minor gene to be segregated and sent to labour camps
3. They can either be used as a source of community labour (no breeding allowed) or sent to gas chambers
4. All new born babies of target communities to also be tested
5. Repeat step 3 for any minors.

Glory be, we now have a thal-free world. Time to start on diabetes.

Wait a minute ..... is the Third Reich back??

You really should think through what you are saying, Mustho.

Cheers

Poirot




Title: Re: When 2 thal minors want to have children.
Post by: AstonDialo on July 28, 2006, 11:13:48 AM
Have you considered cloning someone who is perfect..But then again, is there such thing as perfect?
Title: Re: When 2 thal minors want to have children.
Post by: jemma on July 28, 2006, 12:56:40 PM
Ohh!!!!  I get it now .........  If you dont have the same view point as us then dont bother writing in here......Right...

I came on this site cause i am thal minor and because i have an issue and there are so many people in this world with this same problem.....This is happening every day to other couples.....now whoever wants to live in LA LA land can do just that.  You dont like what i write......EASY dont read it....... And for those who are in this predicament please write....

Thank you
Title: Re: When 2 thal minors want to have children.
Post by: mustho on July 28, 2006, 07:33:33 PM
Hi Jemma, dont take pretext of what others has written, here we all are either thalassemia patients, friends, and well wishers like my self, I am a Thalassemia Rsearcher. There are so many experts in this forum who can help many ways to impart knowledge.

Andy the moderator of this forum is doin super job, to geather bits and pieces of information from here and there and bring in this forum.

When ever you feel not happy about the information ask more, from others ,may be here or may be from other sources.

The important thing is to understand the situation and take right decison at right time.
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on July 28, 2006, 08:08:33 PM
Jemma,
I agree completely with what Mushto said. You are feeling a lot of pressure to have children and this is something NO woman should do until she knows in her heart she is ready and knows what she wants.
Please never feel pressured to have kids. It is a disservice to you and also to any child you might have under those circumstances. Please tell your husband you wish to wait until you are sure how you want to proceed. His pressuring you to abort if it's a thal is doing much harm to you emotionally and you need to find a way to let him know that without upsetting your marriage.

You will know if you are ready to try again and if you are willing to risk having a thal major. I really think in vitro may be best for you and yes it does cost, but care for a major would dwarf those costs.

I hope you realize that we are here to support each other. Your situation is not an easy one and I hope we can all appreciate that having lost one child greatly affects your spirit. Unfortunately, I have heard from many thal minor women who have lost children. It is not uncommon and is so hard to deal with. We'll try to help you find the strength you need.
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on July 29, 2006, 08:44:36 AM
Ohh!!!!  I get it now .........  If you dont have the same view point as us then dont bother writing in here......Right...
I came on this site cause i am thal minor and because i have an issue and there are so many people in this world with this same problem.....This is happening every day to other couples.....now whoever wants to live in LA LA land can do just that.  You dont like what i write......EASY dont read it....... And for those who are in this predicament please write....
Thank you

No, Jemma, you misunderstood what I was saying completely. This is a support forum for Thals. Clear? Most of the people on this forum are Thal Majors. So, if you pose a question on this forum, we will answer/comment from our experiences .... as Miaki and Flower have done so eloquently. If you do not like the answers, that is not OUR fault. This is NOT an abortion support forum.

We think we understand what you are going through, and we are trying to provide you with our real life experiences to help you deal with your issues. But, this does not seem to be what you are looking for. To a disinterested observer like me, it seems to me that you have already taken a decision to terminate a pregnancy if the CVS test says that the foetus is Thal major. So fine, it is your decision ... go ahead with it.

But, at the same time you WANT support from us, thals, to validate your decision. How can that be? How can you ask us, survivors of thal, on whether you should abort or not? We are bound to say NO.

Now, do you understand, how quixotic your questions are?

Poirot
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on July 29, 2006, 02:09:57 PM
I think something Jemma said has been missed.


Quote
It is against my religion to abort and this is why i am having a very difficult time with this.  When i found out about our circumstance i wanted to have a child regardless...my husband wants me to abort a thal major child...After lots of talks with proffesional and seeking different advice i too decided it is probably best to terminate...I am not a  hard hearted person.  My heart is telling me not to do it and my mind is telling me its for the best.  i have to also respect my husbands wishes as well when making this decision.

Jemma is having a very difficult time with this, as her husband and medical professionals are pressuring her to make a choice she abhors.

I am saying please cut Jemma some slack and give her some support. She has actually found people here who agree with her but that's hard to tell from the tone of some posts. Keep in mind that she has also lost a child and only those, like flower, who have experienced this, can know what trauma that involves. Jemma really does NOT want to intentionally lose another through abortion.

Let's understand her whole situation and please do not judge her. Walk a mile in her shoes and then offer some true support instead of outrage at the questions about abortion. I know there is much emotion about the abortion issue and for those who care to know, my own view is it is a woman's body and her decision to make and I don't think I or anyone else should be telling any woman what is right or wrong concerning abortion. But, I am a libertarian and don't think government or society should dictate what any of us do with our own bodies...and to use a phrase I don't much like since some guy at another forum once used my words almost verbatim as his own and then used this phrase...that's my two cents.
Title: Re: When 2 thal minors want to have children.
Post by: jzd24 on July 29, 2006, 08:16:06 PM
Andy,
     You are an amazing person of extraordinary compassion. Your perception of what Jemma is going through is what I feel also. I understand what others are saying, but ultimately it boils down to being compassionate for a person who is doing some soul-searching. We can give our stories, but judging others is counterproductive. Plenty of the time people usually do a good job of judging themselves.

Jemma,
     Good luck in your search for peace of mind. I agree with Andy that a woman should make decisions concerning her body. What is right for you will be right for your child, regardless of circumstances. Or, if you decide to abort, that's OK too, because that is what you felt was best to do. People can only do what they feel is right in their hearts, and only they know what that is. There has been information and opinions from both sides of this issue given - but which path you decide to take will be fine, because you followed your heart. I'm not saying it's easy to do this, but if you strip away all the outside influences, what is your gut instinct telling you to do? Listen to your own voice for a decision you can live with.  My thoughts are with you.    :heartred

Thal majors, 
     I applaud you for your strength and tremendously strong spirits. You are special people who have been greatly challenged. You have met and dealt with that challenge in admirable ways, even though it hasn't been an easy road to go. You have surpassed expectancies that have been made for you. You are people who inspire others to try harder. You have made me feel better by seeing how strong you are, and from your support - thanks!  Jean   :love           
Title: Re: When 2 thal minors want to have children.
Post by: §ãJ¡Ð ساجد on July 30, 2006, 05:38:28 AM
Hi Jemma,

              No one can compel you to stop you from what you feel is better for you. Everyone has his own opinion and it is not necessary that they agree with you.

              A major rule applies to everyone "If they don't agree with you, then it's their own problem."

              I'm afraid you have asked a question to a totally opposite group of people. How can one support abortion if they themselves are alive because their parents didn't opt for it in their case in the first place.

              You should have included the followin in the subject line "A question to Thal-minor (would-be) parents". Unfortunately you haven't found such parents to give you the advice as they will be, somewhat in the same shoes as you. So, it is totally up to you (and your entire family) to decide what is the best option. Can you take care of a child if it shows up +ve on Thal- major. I just hope that you child turns out to be normal so that you don't have to take such dreaded a option as abortion :pray
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on July 30, 2006, 03:24:16 PM
As much as I want to help Jemma, I think that we also need to paint a complete picture for her. It has been said several times that bringing her case to a group that includes so many majors will only bring the point of view that thals should never be aborted, as they themselves would not be here in that case. That is a very valid point of view but it is not the only point of view that you will hear from majors. It will take a lot of courage for the other point of view to be stated.

There is a point of view we have not heard from in this matter and may yet hear from...I do know people who say they wish their parents had aborted and also knew one woman who has now passed, who was incredibly disappointed by what life brought her. No matter what she did, thal kept her from succeeding. Her short stature told everyone there was something wrong and in spite of a very high intelligence and much accomplishment and qualification, academically, she could never find work. Even her own family never believed in her because of thal and the worst was that she couldn't use desferal, due to allergy and L1 didn't work for her. I was one of two friends she had her entire life. She would not agree with what everyone has said about life as a thal being worthwhile, but that was her view. We may still hear this viewpoint on this topic and I hope we do because those who've had advantages such as good care, need to hear that isn't the case for everyone. When I see these thals in some places give up one after another, I know there's plenty of thals who see no reason to live...I think hearing the other "positive" side can help them but the other side needs to recognize that this huge problem of feeling life is not worth living exists wide scale. Yes, there are thal majors who do feel that their parents should have aborted them.

I think both sides of this should be presented. Life can present many many problems for thals and we are doing a disservice to only present one side. I think that anyone who comes to our group, as Jemma has, needs to be presented a complete picture. It is very hard for anyone to step forward and comment to the opposite of what we have heard already and my friend who passed was one who did at the MSN group, only to feel attacked after she posted. As moderator, I will make sure that both views are heard.
Title: Re: When 2 thal minors want to have children.
Post by: Danielle on July 30, 2006, 10:38:25 PM
Ok, well, I was trying to keep my mouth shut on this issue, but maybe it's best for me to give my opinion anyway.   :dunno  Please don't attack me.   :scared

I'm probably one of the only members here with Thal Major that would say I'd abort.  However, this is just my opinion, and what I would do for myself if I had become pregnant with a Thal Major.  Although I've had the best care in my life, with the best family I could ever ask for, life definitely wasn't easy for me or my parents for that matter.  I'm going to be 30 years old this year, and my mother still cries to this day about me having this illness.  She obsesses every day about losing me, or what life would be without me.  That's the life of a parent with a Thal Major child, and it breaks my heart every day.

Am I glad that I'm here?  Yes, I am.  I accomplished a lot in my life, even while going through a lot of issues over the years.  I've been through many surgeries and illnesses due to Thal, and I've had a rough social life growing up because of it also.  I had many friends, but I also had cruel kids calling me names when I was a kid because they didn't know what my illness was about.  It didn't help that I was in the newspaper either, though.    :-\

I always wanted to sleep over my friends' houses, and couldn't because I didn't want them seeing my Desferal pump.  If they slept over my house, I'd have to wait until they fell asleep to put it on.  I just felt like a freak.

As I grew up, it didn't bother me about people knowing anymore, so I openly told everyone.  I'm extremely independent, and never liked when people treated me as if I couldn't do something, so I always made it clear that "I am not physically disabled, just red-cell challenged."   :biggrin

Anyway, life has been very hard for me, but I still had goals, and still do.  I went through all my years of formal school and then went to college.  I was ill on and off through nursing school, but I fought it and made it through.  I never let anything stop me in my life.  I travel all over.  I love to snorkel and jet-ski.  I love to ride roller-coasters and para-sail.  I went back to school after getting my RN and became a Forensic Nurse, and now I'm going back again to become a Nurse Practitioner.  I'll never let this disease get in my way, unless it renders me bed-ridden, and even then I'd be making the best of it.

I'm telling you this for a reason.  Even though I am happy to be alive, and happy that my parents didn't choose to abort me, if I was in that position today, I would have to abort.  I'm pretty much against abortion, but not when the child or mother's life is in danger.  If I became pregnant with a Thal Major, I would not want my child to have to endure the pain that I have been through in my life, and continue to deal with.  It's physically, emotionally, and mentally disastrous.

I probably seem extremely hypocritical, but I just wouldn't want my child to have to endure the pain that I have dealt with my entire life.  I also think it would be horrible for me to wonder if that child will still be breathing the next morning, after tucking him/her into bed at night.  It would drive me insane.   :(

I am not saying what everyone should do.  I'm saying what I would do.

Jemma, the decision is for you and your husband.  Think about it really well, and make sure it's not something you will regret (like if you decide to abort).  Life will be challenging with a Thal-Major, but you won't love him/her any less.  It will still be your child.  However, it's going to be difficult for you and your husband as parents who will see this child in pain (getting stuck with needles, etc).  This is a life-long illness, unless they come out with a fail-proof cure.

There are advantages and disadvantages to everything, and unfortunately this also has both.  But the choice lies on you, not anyone else.  We can only tell you what we would do, not what you should do.  I'm not telling you to abort, and I'm not telling you not to.  I'm telling you what I would do.  I've been through enough to know that I'd never want to put my child through it, no matter what I've accomplished in my life.

I pray that you make the right decision, no matter what you choose.  Please, just think really hard about it before making any rash decisions.  It's still a life we're talking about.   :hug
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on July 30, 2006, 11:32:13 PM
Danielle,

Thank you for a wonderfully honest post on this issue.
Title: Re: When 2 thal minors want to have children.
Post by: mustho on July 31, 2006, 02:01:23 AM
Hi does any one know in whihc religion Medically Terminated Pregnancy (MTP) is not allowed, As Jemma has said her religion does not allow her to make that decison. I am not sure which religion she is. As far as I know and which I have learned as thalassemia researcher,there are these ethical issues. I have attended a conference where this issue has raised. I dont know much about other religions but we had discussion on this issue in Islam (muslims), there were scholars from Iran and I think Saudi. As per these scholars MTP is allowed before 120 days of pragnancy, if there is life threatning condition in the fetus which can  be proved by medical specialists. But After 120 days of pregnacy it is not permitted in Islam to undergo such a procedure.
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on July 31, 2006, 04:01:55 AM
Hi does any one know in whihc religion Medically Terminated Pregnancy (MTP) is not allowed, As Jemma has said her religion does not allow her to make that decison. I am not sure which religion she is.

The Roman Catholic church forbids abortions, under any and all grounds. The church and its followers consider it to be a mortal sin.
Title: Re: When 2 thal minors want to have children.
Post by: jemma on July 31, 2006, 04:06:16 AM
Hello to you all...

Firstly i would like to thank both Andy & Danielle for your understanding and compassion.  Dannielle i would to thank you and give yu a huge hug  :hug for being so honest and brave.  What you had written was exactly the same issues that were brought up while speaking to our genetic counsellor.  Now that all of the people including myself have stopped attacking one another i have been able to read with a clear mind without getting upset or angry.   i am planning to re visit my genetic counsellor to speak about my feelings and i have also booked in for an appointment to see a counsellor to get some help in regards to the death of my baby Ethan.  I think there is alot of hurt and anger there that still has not been dealt with.

I am Greek orthodox and my religion does not condone abortion.  I have also wanted to speak to a priest about my situation.  There is a priest who is also a psychologist. i have wanted to go and see him but am afraid of what he is going to think of me. 

Hearing your story Danielle made me cry.  I know that i am one of those mothers who would constantly be stressed just as your mother was and is with you.  I want my daughter to go to school camps and go to friends houses for sleep overs i know that i would find it so difficult to let a Thal major child do the same.  I dont want any of my children to feel different from the other.  And the one question i pose myself is "if i had a thal major child and they were 3 years old and i had to put the desferral pump attached to them 6 days for 10 hours each day How do i explain to them why they have to do it and yet her sister dosent"

I have really appreciated your objectives views to this matter.

Dannielle i just wanted to give another hug  :hug  :hug  :hug  :hug

Oh allright a few for Andy as well  :hug :hug :hug

Kindest Regards

Vicky  :heartpink :love :flowers
         

                             
Title: Re: When 2 thal minors want to have children.
Post by: §ãJ¡Ð ساجد on July 31, 2006, 05:07:42 AM
Danielle, that was really brave of you to put your personal feelings about this on the thread. :clap

I wanted to post my similar thoughts too, but chose not to because this topic was for Jemma to help her decide. Furthermore, the other Thals have totally different point of view.

Living with Thal. in Pakistan is totally different from any other country. After seeing other less fortunate than me; I thank All-mighty that I am still hanging on.
Title: Re: When 2 thal minors want to have children.
Post by: Miaki on July 31, 2006, 05:11:50 AM
Dear Jemma / Vicky,

Firstly I would like to congratulate you on taking the fist steps into resolving this issue for yourself and seeking professional support / advice.

I believe that once you have gone through the greiving process with baby Ethan, you will find that it will be easier to deal with the next issue in your life. Trying to comfort ones soul is never easy and I do wish you all the best of luck with this journey.

This has been an important issue that needs to be discussed within this community. I am sorry if I seemed abit fiery at times but afew comments that were made got to me and I'm not one to sit quitely when I have an opinion...... We are all entittled to an opinion and that is mine. It seems we were talking at cross purposes on occassion.

I hope that other people in Jemma's situation will share their stories with us here (remember to wave the white flag first ....  :dunno?

I do wish you all the best of luck and please stay in touch and keep us posted on how you're doing.

Miaki





Title: Re: When 2 thal minors want to have children.
Post by: mustho on July 31, 2006, 06:41:29 AM
The Roman Catholic church forbids abortions, under any and all grounds. The church and its followers consider it to be a mortal sin.

Well I think abortion is not allowed in any religon, here I am talking medically terminated pregnancy (MTP) I think this has diffrent meaning than simply abortion. In allopathic medicine MTP is a common practice for many other conditions as well, if there is danger to mother also some times MTP can be done. We dont refer them as simply abortion. Therefore I think its important to clarify this issue, may be its diffrent from society to society and diffrent beliefs.
Title: Re: When 2 thal minors want to have children.
Post by: TruBlue on July 31, 2006, 08:51:37 AM
Hi all, I am husband to a Thal Major woman and reside in Victoria Australia.

I have always followed the forum here with interest but have never felt compelled to contribute.  Might be laziness or just the fact that I rarely had anything different to say than was already being said.  This thread, however, has peked my interest to the point where I feel compelled to offer my views...accord them whatever weight you will.

I had to smirk at your final post Jemma when some poor soul finally gave you the answer you were looking for and basically said he would be better off dead than living with Thal Major.  You enthusiastically greeted his reply with cries of how "Honest" he was and how glad you were that someone finally  sees the light.  By this you basically intone that previous contributors to this thread were being less than honest in their self appraisals of their worthwhile existance and fullfilling lives? You can argue semantics on this, but reading between the lines it is patently and obviously what you implied.

I think I can guess which ethnic background you hail from and I understand some of the cultural problems associated with Thal in Australia only to well. My wifes second language {English is her first} even has a derogatory slang word which is used to describe people with Thal major which basically translates as "The Bloodless Ones"  Some of the particularly dense and insensitive members of this community even use this word in the presence of Thal Majors. Families actively disuade their children from marrying Thal Majors as, and I quote, "They won't be around for long."  Indeed, when my wife accepted my marriage peoposal the wise old heads of the community nodded, agreeing that it was a good thing that a "Yavanger" {Slang for outsider/stranger} wanted to marry her as not many of the boys from her community would have been allowed to. I found this rather amusing as I knew for a fact that a great many of the boys from her families community would have asked for her hand long ago if their families had allowed them to {She's decidedly easy on the eyes}  Their long faces and blunt refusal to shake my hand at gatherings increased my mirth no end I must confess.  I guess its part of my nature to stand up against biggoted people Jemma, whatever their creed.  I fell in love with my wife because of who she is and how she makes me feel and I would never countenance allowing something as trivial as a genetic medical condition to turn me away from a love like that. 

To hear you deride the existance of people with this condition, and decide to kill your own child should the trait present itself upsets me more than a little. I may get into trouble for stating that as bluntly as I have as watered down politically correct responses appear to be the order of the day around here, but I have always prided myself on an innate ability to cut to the chase. Instead of killing your own children adopt instead, or divorce your husband and marry a non-Thal Minor thusly pretty much elliminating the chances alltogether. Playing "pick and choose" with Gods most prcious gifts is a terrible game to play.  Have a think about what your asking here, and why your asking it at all? Sure you'll find some downtrodden viictims, who probably would have gone through life with a chip on their shoulders even if they were born without a genetic condition, who will vindicate your position and decry their own existance....But your far more likely to encounter people full of passion and life who live it to the full....and you know why Jemma? Because apart from a slip of fate and a small genetic footprint in the sand.....theyre just the same as you and me.

Ohh, just one last addition to my thoughts on this matter.  There is absolutely no excuse to abort a Thal Major in Australia {Particularly Vic} as we have the best therapy/transfussion centre in the world.  Just means you have to take your child in for transfusions every couple of weeks and organise iron chelation tablets once a night, six days a week. Too much of a problem for you Jem? Or are the snickering voices behind raised hands in your community what really worries you?
Title: Re: When 2 thal minors want to have children.
Post by: Danielle on July 31, 2006, 09:09:11 AM
Too much of a problem for you Jem? Or are the snickering voices behind raised hands in your community what really worries you?

You think that's it?  You think we just get a few transfusions here and there, and pop a few pills?   :huh

TruBlue, there is to be no defamation here, and I feel that your post was disrespecting Jemma.  This is a very tough decision for her, and she is only asking for our opinions.  There is no reason to flame her for wanting opinions.
Title: Re: When 2 thal minors want to have children.
Post by: Danielle on July 31, 2006, 09:13:08 AM
Dannielle i just wanted to give another hug  :hug  :hug  :hug  :hug

Thank you, Jemma.  :wub

I hope that you will make the right decision for you and your husband, not anyone else.

I also want to say how very sorry I am for the loss of your baby, Ethan.   :hug  :hug :hug :hug
Title: Re: When 2 thal minors want to have children.
Post by: AstonDialo on July 31, 2006, 10:09:57 AM

Metallica - The Struggle Within
 

Reaching out for something you've got to feel
while clutching to what you had thought was real

kicking at a dead horse pleases you
no way of showing your gratitude
so many things you don't want to do
what is it? what have you got to lose

what the hell
what is you think you're gonna find?
hypocrite
boredom sets into the boring mind

    struggle within   it suits you fine
    struggle within   your ruin
    struggle within   you seal your own coffin
    struggle within   the struggling within

home is not a home it becomes a hell
turning it into your prison cell
advantages are taken, not handed out
while you struggle inside your hell

reaching out
grabbing for something you've got to feel
closing in
the pressure upon you is so real

    struggle within   it suits you fine
    struggle within   your ruin
    struggle within   you seal your own coffin
    struggle within   the struggling within

reaching out for something you've got to feel
while clutching to what you had thought was real
what the hell

what is you think you're gonna find
hypocrite
boredom sets into the boring mind

    struggle within   it suits you fine
    struggle within   your ruin
    struggle within   you seal your own coffin
    struggle within   the struggling within








Title: Re: When 2 thal minors want to have children.
Post by: Poirot on July 31, 2006, 11:22:36 AM
Well I think abortion is not allowed in any religon, here I am talking medically terminated pregnancy (MTP) I think this has diffrent meaning than simply abortion. In allopathic medicine MTP is a common practice for many other conditions as well, if there is danger to mother also some times MTP can be done. We dont refer them as simply abortion. Therefore I think its important to clarify this issue, may be its diffrent from society to society and diffrent beliefs.

MTP is just a form of abortion, under special circumstances as defined by a doctor or patient ...... the catholic church proscribes abortion in all forms and cases .... read up on it if you have any doubts about what I am saying.

Actually, based on what I have read of theology, Hinduism has a more open mind on this topic .... a more woman-friendly approach, if you will. Hindu texts take a fairly ambiguous approach to this whole issue .... but anyway, that's a topic for another day.

 
Title: Re: When 2 thal minors want to have children.
Post by: §ãJ¡Ð ساجد on July 31, 2006, 11:44:25 AM
Actually, based on what I have read of theology, Hinduism has a more open mind on this topic .... a more woman-friendly approach, if you will. Hindu texts take a fairly ambiguous approach to this whole issue

Yes you can compare different views of the reliigons from the following links. I can say that the information about Islam in the link is correct.

For Church of England: http://www.bbc.co.uk/religion/ethics/abortion/relig_anglican1.shtml (http://www.bbc.co.uk/religion/ethics/abortion/relig_anglican1.shtml)
For Catholicism: http://www.bbc.co.uk/religion/ethics/abortion/relig_catholicism1.shtml (http://www.bbc.co.uk/religion/ethics/abortion/relig_catholicism1.shtml)
For Islam : http://www.bbc.co.uk/religion/ethics/abortion/relig_islam1.shtml (http://www.bbc.co.uk/religion/ethics/abortion/relig_islam1.shtml)
For Hinduism : http://www.bbc.co.uk/religion/ethics/abortion/relig_hinduism1.shtml (http://www.bbc.co.uk/religion/ethics/abortion/relig_hinduism1.shtml)
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on July 31, 2006, 12:04:27 PM
When I see these thals in some places give up one after another, I know there's plenty of thals who see no reason to live...I think hearing the other "positive" side can help them but the other side needs to recognize that this huge problem of feeling life is not worth living exists wide scale.

Andy,

Think back to the reasons that made you and Shilpa undertake the trip to Maldives? Was it just to listen to the stories of the Maldivian Thals and to come up with a "balanced" picture? Or did you have a more positive reason for the trip? Does that positive reason dovetail with the more positive posts on this topic earlier?

I would like to put up three points for discussion here:

1. I don't how to say this correctly, but balance is not always good. Our objective here is to provide positive support for all Thals, not to tell them, sorry buddy, you are toast, no matter how bad their current circumstances may be. And, I think you only have to look to Maldives for supporting evidence of this.

2. I know (being in India) and you know (having travelled and interacted with us) how bad the condition of many thals are in "third-world" countries. But, a lot of the issues relate to past problems. IMO, for large problems (which Thal is), one should not look at the status in absolute, but what is happening incrementally? Incrementally, all changes have been positive in India, and you have been a catalyst for such changes in Maldives. So, yes, I grieve for that poor girl in Delhi who was disappointed, and she would have represented a majority of thal cases in India 10 years back. Today, she won't be ..... at the margin, the changes are all positive. And, I believe it is our role here to keep harping on the positive. This is one reason why I had that argument with Shikha about conditions in India.

3. I don't believe putting positive stories on the board is presenting only one side ....... we have talked about our issues plenty .... but, it does act as a "beacon of happiness and friendship" to less well-off thals. In fact, I would positively exhort such thals to post their stories, so that we may "share the burden". In this dreary world of ours, the more we can talk about the positives, the more positive we become.

4. To use "third world" examples to solve a "first world" problem is inappropriate, in my opinion. You should have used examples from the context in which Jemma is based, because it is hardly likely that she is going to run into the same problems as the Delhi girl, is it?

Poirot

Title: Re: When 2 thal minors want to have children.
Post by: Poirot on July 31, 2006, 12:13:27 PM
Yes you can compare different views of the reliigons from the following links. I can say that the information about Islam in the link is correct.

For Hinduism : http://www.bbc.co.uk/religion/ethics/abortion/relig_hinduism1.shtml (http://www.bbc.co.uk/religion/ethics/abortion/relig_hinduism1.shtml)

Actually, that BBC post about Hinduism is factually incorrect in many cases, including its foundation/basis of "ahimsa" (non-violence) .... the latter is really the foundation of Buddhism and Jainism. In hinduism, it was co-opted by Mahatma Gandhi in the early 1900's during his fight for Indian Independence. In Hinduism, pre-Gandhi, it was "mandatory" for a person to combat evil by every means, including violence. Krishna explains this beautifully to Arjun, in the Gita, about why he must wage war against his cousins and uncles.

Oh well, that link is a typical media post!!

Cheers
Title: Re: When 2 thal minors want to have children.
Post by: TruBlue on July 31, 2006, 12:21:07 PM
Ah, that was actually my opinion Danielle.  Not sure where the confusion is there?  I don't bother with whatever "Flames" are, in fact I rarely bother with the internet full stop.  Still, Ill take whatever my post brings square on the chin...I’m a big boy after all :-) And when I feel compelled to articulate an opinion or take a position, I do so wholeheartedly and like to think I leave no confusion.

As to the second point you raised, I'm not fully cognisant of the treatment regime in the USA but yes, as a matter of fact, for my wife that is pretty much the procedure we go through now. There are yearly MRI scans, ECG and ECHO, CT liver scans, Bone Density Scans, frequent blood tests and  the occasional UTI  {Urinary Tract Infection} problem and, of course, other issues related with the condition that require ongoing monitoring and preventative health maintenance.

I’m not overly enamoured with the standpoint Jemma has adopted Danielle and, surprise surprise, unlike your own President I do actually believe in a woman’s right to chose...however....I have an uncomfortably intimate understanding of the unfortunate stigma relating to Thal Majors in two large Victorian, Australian ethnic communities in particular.  I'm not sure if you endure the same dynamics yourself, but I do actually have a pretty sound understanding of what I am talking about...hence the reason I ventured MY opinion! 

I don't coat my words in sugar and leave people guessing...I shoot straight and ill take what comes as a result.  I'm not Thalassaemic, but I love one more dearly than life itself....or perhaps just as dearly?  Whats more, I happily take time off work and drive 350kms every two weeks and book a room for the night for my wife’s transfusions...or MRI's...or UTI's or whatever she needs or has to have done and count myself blessed to be able to do so.  Its my honour Danielle, its part of my life Daniell, its part of my wife!  Part of what makes her the incredibly independent, caring and DAMNABLY tough person that she is. 

In closing I will state my opinion clearly for you:  A manageable genetic disorder with constantly improving treatment options and the very real possibility of gene therapy targeting is a VERY poor reason for terminating a human life.   
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on July 31, 2006, 12:38:29 PM
I wanted to post my similar thoughts too, but chose not to because this topic was for Jemma to help her decide. Furthermore, the other Thals have totally different point of view.

Sajid,

You should post your views and not worry about other thals having different points of view. Thats what makes for an open discussion and we all learn from it. And, I mean that, in toto.

Poirot
Title: Re: When 2 thal minors want to have children.
Post by: SalD on July 31, 2006, 12:45:25 PM
Hi!

:blush  I don't live with thalassaemia major and I don't know if I'm a carrier yet (I read this board often as I work with/for the thalassaemia community in Victoria, Australia), but I would like to make a small (humble) point...

I'd just like to pick up on something TruBlu said
Quote
I do actually believe in a woman’s right to chose
.  The thing is that now with testing to diagnose a carrier of thalassaemia, as well as diagnose a foetus with thalassaemia, there are many choices that a FAMILY (not just a woman) have to make about thalassaemia.  For someone who doesn't know anyone who lives with thalassaemia major, it is very hard to be informed about the reality of living with this condition and hence make a choice.  Thalassaemia carriers are a large proportion of the thalassaemia community too, and I believe that this board is also to offer them support and advice (based on the fact there is a Thalassaemia Minor section).  Doctors can give medical advice about life with thalassaemia, but they cannot provide personal experiences - only you guys can do that!

I salute everyone who has expressed their opinions and shared their stories so far in this thread.  It is obvious that this is an emotive topic and people have strong beliefs, and this makes it hard to read other people's opinions without getting angry!  I really hope that this discussion continues in different shapes and forms on this message board, and is able to help newcomers to form their own opinions. 

IN SHORT (as I think I have waffled unlike TruBlu):  I think this discussion is difficult but important and wish I could contribue in a more helpful fashion.  GOOD WORK to all those who have been able to express their opinions.   :clap

SalD.
Title: Re: When 2 thal minors want to have children.
Post by: jemma on July 31, 2006, 12:52:33 PM
Dear Tru Blue,

I believe you may have misunderstood me.  Let me explain......  I have no problem with any Thal major person.  My cousin is a Thal major. I do not look at her and think to myself gee her mum should have aborted her.  Her condition is rarely talked about unless she has something to say about it.  She herself has offered me support.  She is having blood transfusions once a week now,  and thinking about quitting her part time job as a teacher because she is too tired.  She has no children as she dosent know how long she will be aroud for.  She is 37.

I have another cousin who has Down Sydrome.  I see her no differently to any of my other cousins.  However when performing the CVS test they look for that as well and if Down Sydrome had presented itself i would be in the same predicament.  It dosent mean i see Louise (my cousin) in a different light.  I am glad and happy that she is here with us.

My sister in law had an abortion purely because it was the wrong time.  Would i do the the same? Definetely NO!!!!!!!!  However i offered her whatever support i could.  And at a point i was so angry at her but i nver showed it to her.  I was angry because she had a perfectly healthy baby that she aborted.  What good would it have done if i just preached about what she should have done?????

I praised Danielle for being so honest and brave because she spoke objectively.  She did not once say what i should do but rather giving me the good with the bad.  She gave me the TRUTH of what it really is like.  What Danielle touched on is exactly what the genetic counsellors and myself spoke about in great length.

I have thought about adoption.  I dont trust myself though to love someone else's child like i love my own biological child.  And leaving my husband and marrying someone else.............HA HA  We have a beatiful daughter who loves us both and i love my husband too much.

Your wife is agrown woman who has learnt to deal with this condition way before you came along.  I want you to think of all the medical procedures your wife has gone thru since you have met her but in her place i want you to think it is your 2 year old child.  Its all a very different ball game.  

I have no idea what i am going to do.  I have looked at all posts again and again.  I am seeing a genetic counsellor again.  This is an incredibly difficult decision for me.  This is not a personal attack on any thal major person.
I AM NOT taking this decision lightly.

Thank you...

Miaki,

Thanks for your post made me feel better. Will keep in touch :hug
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on July 31, 2006, 01:34:43 PM
TruBlue,

Can you show me in what post this was said?

Quote
I had to smirk at your final post Jemma when some poor soul finally gave you the answer you were looking for and basically said he would be better off dead than living with Thal Major.

I don't recall anyone stating that so far in this thread, although I have had people tell me this privately.
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on July 31, 2006, 02:25:30 PM
Poirot,

I'm not sure what the problem is that you have in all sides of an issue being presented. As moderator, I feel it is often my duty to ensure that this does happen, and in that role have often asked people to post, presenting their views on an issue.

Your remarks about the Maldivian trip are incomplete. We did go there specifically because the problem there is so difficult. In spite of reasonably adequate basic case in Maldives, many patients there still do give up and refuse to chelate or do any of the things that will keep them alive. The sad fact is that the oldest patient there is only 26! Yes, we were there to preach the positive but there is and was no way to do this if we are going to ignore the negatvies. We surely couldn't go into Maldives and tell them life is a bed of roses if you're thal, because they're too smart to believe such a statement. They know the negatives and make no bones about telling us what the negatives are there. I do feel that Danielle has been extremely honest in her approach and given the bad along with the good. I guess we can be like my president and just talk about the good and ignore what doesn't suit that point of view, but I choose not to. I am still quite amazed that a citizen of India can make some of the statements you make about being a thal in India. Face it Poirot, you are one of the priviliged in India. How many of your countrymen are provided the care you get? How many thal majors die before the age of 10 due to lack of even the most basic care? You can't ignore that this happens widely in India, Pakistan, Thailand etc. It is a pure and simple fact. Things may have changed greatly in India, but this is not for all thals and many still find life involves little if any care. How many Indians can afford desferal? Not everyone can use L1. When I was in India and saw the incredible amount of poor people living in the cities (far more are in the rural communities), my thought was "how many of these are thal carriers and what life do their thal children have?" It can't be ignored. How many millions live in India with little or no medical care available? You know what happens to their thal children. They die young. Yes, India has changed, but it still has a long way to go just in terms of survival, let alone the huge social issues involved. How many parents in India would allow their son to marry a woman with thal? When the answer is zero, please let me know.

As for the point about addressing Jemma. Every single post here is read not only by the writer and whoever it is directed at, but also all of the other members and at least an equal number of non-members from all over the world. I seldom post to one specific person. This topic will be read by countless people, many of whom are facing the same dilemma and I will not narrow down the issue to what anyone's perception of Jemma is, which in my view has been a sometiimes distorted perception. Jemma came here for advice and support and quite frankly, she was attacked repeatedly by some of the members and is still being attacked and misunderstood by some. If anyone doesn't get it by now, Jemma really does not want to be put in a position where the pressure to abort will exist. In spite of all the positives everyone has said about thal care in Australia, in her immediate life, the pressure from those around her is to abort in the occasion that she becomes pregnant with a thal major. That is her reality and all the talk about thal being a wonderful life is not going to change the minds of those around her. Perhaps if she can get her husband and doctors to read all these posts it may have some impact on them, but we are dealing with pre-conceived notions and they are not always easy to change. Attacks and smirks will not change any of this. As we have seen with the Maldives, decent care and well wishing does not solve this problem. Maldives needs a huge shake up in their society to educate the general public that thals can and do live real lives, that include careers, marriage and children. Until this happens, many thals there will continue to see no reason to live, as their social future remains quite often bleak. Every week I have another Maldivian tell me that someone broke up with them because they are thal and the parents will not allow it. Without the hope for basic human companionship in life, many thals do give up. This has to change in Maldives, and frankly, after reading TruBlue's post mentioning how so many people within the communities producing thals in Australia, also treat thals badly and either aren't allowed or would even think of marrying a thal, there is obviously MUCH work that needs to be done to change attitudes in the very developed Australia.

Poirot, I am not going to sugar coat thal and pretend there are no negatives. What rubbish that idea is! How many of our members know much better than that? If we are only going to present positive feel good posts, then should we delete the whole Mumbai bombing thread? I think not! And I really think we will do a huge disservice if we only present positive posts. Part of our objective is to educate and part of the reason for that is to find help for people everywhere. If we sugar coat everything, who is going to believe thals need help?!!! If the negative is never discussed, it won't change.

I will continue tp present or ask others to present varying sides of issues here. Yes, we will stress the positive, but only presenting the positive will do a huge disservice to our members and thals everywhere.

And for the record, in Maldives, Shilpa and I presented an extremely positive message but at no time did we tell anyone we didn't want to hear what is negative. Only by hearing and understanding the negatives can we ever change things for the positive.
Title: Re: When 2 thal minors want to have children.
Post by: TruBlue on July 31, 2006, 02:52:27 PM
No one "stated"  it Andy, I deduced from the following:

{Im not sure how to do quotes, so bare with me please}

I'm going to be 30 years old this year, and my mother still cries to this day about me having this illness.  She obsesses every day about losing me, or what life would be without me.  That's the life of a parent with a Thal Major child, and it breaks my heart every day.

I probably seem extremely hypocritical, but I just wouldn't want my child to have to endure the pain that I have dealt with my entire life.  I also think it would be horrible for me to wonder if that child will still be breathing the next morning, after tucking him/her into bed at night.  It would drive me insane.   

I am not saying what everyone should do.  I'm saying what I would do.


I might be wrong in the conclusions I drew, and maybe more than a little emotional when I fired off the post.   My conclusion is doubtless biased by my own experiences and outlook on life Andy, as are everyone elses.  My intention was to give my opinion, emotions and all. Subject it to forensic analaysis if you want, and action accordingly as is your right and responsability as the administrator of the group.  I will have no problem with that as I've said my peace and feel the better for it.

Readers will pick and chose as accords their own opinions on the issue but my post has been greatly cathartic for me and has served to remind me of just how lucky I am that my wife was not discarded by her parents.  I rarely see eye to eye with my wifes parents, but for the gift of her life I will certainly pay them due thanks.

On a different subject, I think you do a fantastic job and applaud the diplomacy you excercise to great effect time and again in these forums.  Your a genuine "Top Bloke" as we say over here in Australia and I think your friend Lisa would certainly approve of the quiet resolve you demonstarate so admirably.





   
Title: Re: When 2 thal minors want to have children.
Post by: TruBlue on July 31, 2006, 02:57:26 PM
How does that song by "Chumbawumba" go again?  The TubThumping one....

"I get knocked down"
"But I get up again"
"You aint never gunna keep me down"

The rest of it is pretty much about alcohol from memory, but I always liked that part.  My wife always humms along to it when it reappears on the radio. I have a sneaking suspicion it means alot more to here than a mere beer drinking song....It must anyway as she doesn't drink  :wink
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on July 31, 2006, 03:10:44 PM
TruBlue,
For the purpose of clarification, even though Danielle said what she did about life as a major, if you read her posts you will see someone who embraces life to its fullest and is very much happy to be alive. She would never say she wishes she was dead. She did say she wouldn't recommend life as a parent of a thal and that is based on the experience she has had in her own life. I feel this speaks more to Danielle's personal compassion towards parents and not wishing them the difficult life of raising a major. She speaks through her own eyes and has seen the effect on her own parents.

However, I have talked to thals around the world who have told me they wish they were never born and that is a fact, sad as it is, and I feel that one of the main goals of our group has to be changing this attitude. Thals have to be given the same opportunities anyone else has in life and the acceptance into society that is needed to give them the incentive to comply with treatment and stay alive.

I'd like to thank you and Jemma and Jean for your kind comments in this thread. I do try to keep us all together and intervene when I see a discussion losing its focus and wallowing into areas where there can be no productive outcome. I also try very hard to carry on in Lisa's spirit and present things the way I think she would want. The approval of her family and friends tells me I am doing at least a minimum to make that so.

To everyone, this topic is one that is loaded with emotion because of the abortion issue. I would ask that everyone read thoroughly and even read between the lines when necessary. Yes, Jemma did ask about abortion but if you read every comment she has made, you will discover this was never her own idea. She abhors the idea and this is why she came here in the first place. She isn't looking for anyone who will help her justify having an abortion. She wants our input into what everyone thinks is the right course of action. I stated in my early post in this thread that she needs to find her inner strength before having anymore children, thal or non thal, and I stick to that. We can help her by showing her how we find the strength to deal with the problems of parenthood. This is a very positive approach and we can have some impact on her and we can help her find some strength by being her friend and supporter. I am not about to judge her, no matter what decision she makes and I hope no one here feels they can act as God and be her judge.

Thank you all.
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on July 31, 2006, 03:16:06 PM
By the way, TruBlue, I know your wife and she is a wonderful person and is a shining example to be shown to all those blockheads who refuse to let their children marry a thal. She has everything I am constantly preaching thals should be allowed to have and is someone I often hold up to thals in places like Maldives as an example of how it should be. Your support as a husband has no small part in this and is a lesson to compassionate people everywhere. We need to create this situation universally so that every thal can have what your wife has...a normal life just like everyone else.  :biggrin
Title: Re: When 2 thal minors want to have children.
Post by: TruBlue on July 31, 2006, 03:26:51 PM
Oops, if she sees I've been posting I may well get in trouble.  She loves the outlet this forum provides and adores the friends she has made here. Often, when she's a little down after work or close to her transfusion date , she will log on and bounce back in no time.

I should have asked her before posting, but I never do let thinking get in the way of action LOL  Much to my dettriment im afraid  :dunno
Title: Re: When 2 thal minors want to have children.
Post by: Danielle on July 31, 2006, 05:05:43 PM
For the purpose of clarification, even though Danielle said what she did about life as a major, if you read her posts you will see someone who embraces life to its fullest and is very much happy to be alive. She would never say she wishes she was dead. She did say she wouldn't recommend life as a parent of a thal and that is based on the experience she has had in her own life. I feel this speaks more to Danielle's personal compassion towards parents and not wishing them the difficult life of raising a major. She speaks through her own eyes and has seen the effect on her own parents.

Exactly.  Thank you, Andy!   :biggrin
Title: Re: When 2 thal minors want to have children.
Post by: Danielle on July 31, 2006, 05:17:27 PM
Ah, that was actually my opinion Danielle.  Not sure where the confusion is there?

Yes, it was your opinion.  However, you were subtly attacking Jemma.  You are able to state your opinions, but I'd rather see you do that without making accusations or sarcastic remarks.  I understand that this is a sensitive subject for you, since your wife has Thal Major, but it's a sensitive subject for most of the members here also.  Andy and I would like to keep this forum as civil as possible, while giving everyone a chance to state their own opinions, whether positive or negative.  :)
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on August 01, 2006, 10:57:23 AM
Andy,

I was really saddened by some of your comments. Let me try to address your concerns in a few posts, since you raise mutliple issues.

First,

I am still quite amazed that a citizen of India can make some of the statements you make about being a thal in India. Face it Poirot, you are one of the priviliged in India.

You look at me today and say I am privileged. In many ways, I am. TODAY.

But, I was NOT when I was 5 or 10 or 15 years old ..... I had to struggle through the same system, which was much worse then. My family was bottom of middle-class, so it is not like they had tons of doubloons to spend on my treatment. I started chelation only at the age of 15, had my splenectomy done at 17. So, been there, done that, buddy. Survived to tell the tale. And, sure I have an attitude about it and am not apologetic about it. And, I want every thal to have the same attitude, too ...... the same "can do" attitude.

I worked to get to this position, it is not because of a rich family background..... the ones who were rich emigrated to US or UK. And, I do want to highlight this fact to all other Thals who may be thinking the same as Andy. I agree I was lucky to be in Bombay those days, where some care was available. Care was patchier elsewhere. Today the same quality of care is available in most big cities. And, my exhortation to fellow thals is that if I could do it those days, you can do much better these days. I am not really special in anyway that allowed me to do this ..... So, go for it!

Poirot
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on August 01, 2006, 11:23:56 AM
Second, Andy, when you speak about India's problems, thus:

Quote
How many of your countrymen are provided the care you get? How many thal majors die before the age of 10 due to lack of even the most basic care? You can't ignore that this happens widely in India, Pakistan, Thailand etc. It is a pure and simple fact. Things may have changed greatly in India, but this is not for all thals and many still find life involves little if any care. How many Indians can afford desferal? Not everyone can use L1. When I was in India and saw the incredible amount of poor people living in the cities (far more are in the rural communities), my thought was "how many of these are thal carriers and what life do their thal children have?" It can't be ignored.

Do you think I am not aware of this? You are amazed at my statements about India? Shouldn't you be happy instead that care is improving, EVEN IF, not ALL thals get it right now? I have tried to be objective about India and conditions here, although this is biased by my experiences.  But, sometimes you hear such "motherhood" statements, that you have to object. INDIA IS A POOR COUNTRY. We know that, you know that, everyone knows that .... so, can we now take that as a given? It is a country of 1.2bn people, so when you apply examples from your own universe, please be aware of the scale difference. Now, what has happened in the last 10 years? Average life expectancy of thals have gone up, across the country, not just in Bombay. The availability of L1 has improved chelation. There are now trusts in many major cities that provide desferal free of cost to those who can not afford it. Awareness of thal has increased, so there is a lot more testing that happens for thal minor and in our society of "arranged marriages", you could then not get married to another thal minor. What else has happened? Infant mortality has come down. Polio has been eradicated. The scrouge of Malaria has reduced. AIDS is being tackled more openly (and hence more effectively) now.

Does that mean everything is all right about India? No, it is NOT....... but, it takes time given the population base that we have. Does that mean we should not celebrate the progress we make and focus on the upswing as it happens???? If I am positive, maybe that positive feeling rubs off on 5 more people and they start acting more positively, and then that rubs on .... etc, you get what I am saying? I am not sure how many thal majors die today before the age of 10 nationwide (in my centre, we have not lost anyone below the age of 10 in the last 15 yrs), but I know the number is significantly lower than what it used to be 5 years back. And, to me that is cause enough to be positive today.

You looked at all those shanties and wondered "how many of these are thal carriers and what life do their thal children have?". The shanty dwellers would have laughed at you for your "first world" sentiment. They have more pressing problems to think of ..... housing, basic sanitation, potable water ...... so the problems of India are many. Does that mean we should stop being positive for the progress we are making in thal treatment in India today, however inadequate it may still be in comparison with Aus or USA?

Title: Re: When 2 thal minors want to have children.
Post by: Poirot on August 01, 2006, 12:01:35 PM
Finally, Andy, when you talk about Maldives:

Quote
Your remarks about the Maldivian trip are incomplete. We did go there specifically because the problem there is so difficult. In spite of reasonably adequate basic case in Maldives, many patients there still do give up and refuse to chelate or do any of the things that will keep them alive.

Oh, I am confused now. Why DID you go to Maldives, then? I thought it was to tell the Maldivian Thals that life was worth living, and that they could do that, with help.  To tell them to chelate, so that they could live. And for Shilpa to relate her real life experiences. Sure, you  listened to them  ..... but did that make you change YOUR message about life?

Quote
We surely couldn't go into Maldives and tell them life is a bed of roses if you're thal, because they're too smart to believe such a statement.

You couldn't tell that to any "normal" person either, so why bring it up in this context. Life as a bed of roses probably only exists in the life of the idle rich in P G Wodehouse novels, and even then Bertie Wooster had his troubles.

Quote
Maldives needs a huge shake up in their society to educate the general public that thals can and do live real lives, that include careers, marriage and children. Until this happens, many thals there will continue to see no reason to live, as their social future remains quite often bleak. Every week I have another Maldivian tell me that someone broke up with them because they are thal and the parents will not allow it. Without the hope for basic human companionship in life, many thals do give up. This has to change in Maldives, and frankly, after reading TruBlue's post mentioning how so many people within the communities producing thals in Australia, also treat thals badly and either aren't allowed or would even think of marrying a thal, there is obviously MUCH work that needs to be done to change attitudes in the very developed Australia.

I couldn't AGREE more with you. You change attitudes by presenting positive examples, by talking a positive line, by boosting morale and saying this is not the end of the world.

I am not saying and NEVER said that you stop listening to the negatives or seeing the negatives, but it is MUCH MORE important how you deal with the negative when you come across it. Isn't that our objective? To provide SUPPORT and GOOD CHEER when people are tired and can only see the negatives? I would be very sorry to see this objective lost.

Poirot
Title: Re: When 2 thal minors want to have children.
Post by: floWer on August 01, 2006, 12:33:03 PM
.
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on August 01, 2006, 12:45:02 PM
.

Thank you for reminding us, Flower.

 :heartred :heartred :heartred to all.

Poirot
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on August 01, 2006, 02:49:44 PM
Well, Poirot, I think you successfully distorted each point I made. I will say this grew out of your problem with me presenting the negative side of thal and in this context of this thread I will continue to say that we would do a great disservice if we ignored the multiple negatives of being a thal. Jemma needs to know the reality of what it is to be thal just as any prospective parent of a thal major should.

I'm not going to battle you point by point because I haven't seen any point made that was relevant to anything I said. Although I would add to your list of concerns of the poor, lack of health care. Yeah, that also is a very pressing need for the poor just as it is for us all. And are we to believe that because they are poor that they don't care when their thal children die? They care just as much as you or I would care if one of our children were to die. Just because things are going smoothly at your local center does not mean that represents a majority of India. The parochial views often expressed in this group demonstrate tunnel vision and nothing else. This is a big world folks, and sometimes you have to look beyond the end of your own street to see what it is like elsewhere.

Your comments about our trip to the Maldives are downright stupid and I really think you should be embarrassed for stretching so far to try to make points. We didn't have to bring a single negative point to anyone in the Maldives. THEY brought and bring them to us daily! I'm not going to ignore these problems and tell them life is peachy keen for thals because it isn't there and quite frankly it isn't anywhere. When you can put your transfusion in a pill and take a chelator that has NO side effects and also eliminate the host of problems associated with thal, like osteopenia, diabetes, thryroid and hormone malfunction, reproductive disorders, spleen and gallbladder troubles, enlarged left ventricles in 95% of thal patients, pulmonary hypertension, majority death due to heart failure and the host of other problems, please let me know. Then I will present the rosy picture you think we should to prospective parents. I was attacked for saying Danielle's post was honest and dammit, it was! A prospective parent needs to know what they're getting into and we are being competely disingenuous when we pretend all these problems of thal don't exist. I was asked yesterday by a patient that if life as a thal is so wonderful, why do we need a support group? There are people who would like to speak out on this board who won't because they are afraid of being attacked and called things like downtrodden victims who would have a chip on their shoulder even if they weren't thals. That is one of THE MOST INSULTING things I have ever heard applied to thals and it made me quite ill to read. What a totally insensitive thing to say to patients whose life has been a constant struggle to stay alive! TruBlue is free to shoot from the hip but as is often the case when one does so, all he managed to do was shoot himself in the foot. Thinking before talking is always a recommended process. Coming into a group of people who gathered for support and attacking them as downtrodden victims will not win many friends.

Personally I am quite fed up with this thread. People are posting for the sole purpose of pushing their own "moral" agenda and also for the purpose of making obtuse points, when the person who started this thread came with the hopes of finding some support and counsel about a situtaion that hasn't even arrived and instead of support she was attacked. When others come to her defense they have also been attacked. I will not back down. I know what type of group Lisa created and the tolerance that she expected from its members and I will fight to keep this group tolerant as Lisa would want me to. She would never have condemned any woman for considering an abortion and we shouldn't either. And please, if I hear one more person tell us that they are pro-choice and then go on to talk about killing babies, I will scream! And one of these people had the gall to attack my comment about honesty? Don't make a statement only to counter it with your own words.

Wow! Am I a little ticked off by this thread? YES!!! If there are people here who want to define friendship by insisting their friends agree with them on every issue then that isn't friendship. If you think I won't be your friend because we have different views on what rights a woman should have over her own body you really belittle our friendship. Just as many of you did, I will also speak my mind but I will also do everything I can to keep us from each other's throats.
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on August 01, 2006, 02:54:26 PM
One more point I would like to add. While we have been so consumed by this topic because the word abortion was used, other people have come to this group with problems they actually already have and been virtually ignored. Can we please get back to business and address these?
Title: Re: When 2 thal minors want to have children.
Post by: TruBlue on August 01, 2006, 09:39:20 PM
Hmm, I will submit any future posts for your approval then Andy and make sure that they conform shall I? I can't reply with the clarity that I would like to for the simple reason I private messaged you with.  Don't stress too much though mate, Ive made my points and will continue to communicate with the others I have met in my brief time in this forum prvately without submitting further posts. In closing, you accuse others of missing the point here Andy, you might want to look a little closer to home before brandishing that claim. Would have appreciated the opportunity to get the old pistols out and shoot straight on this one too.  Have never hit my feet yet but you never know?
Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on August 02, 2006, 02:16:13 AM
TruBlue,

I do not understand why you have joined a SUPPORT group. This is a group that people join to find help, answers and support. It is not one of the many online forums where people go to rant and rave and shove their weight around and attempt to intimidate. It is not the old west where everyone shoots first and asks questions later. Members are expected to abide by a certain code of conduct, with one of the main expectations being tolerance of others and their views. We are an international group with many different races and ethnic groups, religions and spiritual beliefs. We are not here for the purpose of attacking someone because we disagree with his or her views. We are not here to call names and deride each other. Yes, I have a great problem with you calling anyone who agrees with Jemma, a downtrodden victim with a chip on their shoulder. There are many thals who do not think their lives have much if any value and this has nothing to do with anyone carrying a chip. It has to do with the life they are presented and the many, often cruel obstacles placed in their paths. I counsel people like this on a daily basis and to hear you call them downtrodden victims and stick to your guns on that statement does cause considerable outrage. I have had close friends give up and die because their lives were that bad. I do everything I can to convince people that their lives are indeed worth living, and acting like somehow it's all their own fault because of a bad attitude is one of the worst things we can tell thals. So many people struggle so hard to stay alive and fight not only medical but constant social battles and to portray them the way you did is not only wrong in fact, but also just plain nasty.

You said you made your point, but your main point seemed to try to be rude, insensitive, insulting, sarcastic and derisive. You've insulted Jemma and Danielle and anyone who dares disagree with your views. I do not ask people to submit posts to me and even when people have offered to delete their own posts that may have been too harsh I never tell them to do so. That is their own decision. What you post is up to you but we do expect that all posters will try to be tolerant of each others and each other's beliefs. This has served this group well and will continue to serve this group well.

And for those who wish to turn this into a forum on abortion...Please do a search for one of the many online abortion forums. This is a thalassemia forum. The rights and wrongs of abortion are debated perpetually but are not appropriate here.  We will have people come to us who are considering abortion or have even had abortions. It is not for us to judge but it is for us to help and support where we can. Many people will be counseled about a thal major pregnancy and abortion will often be presented as one alternative. Some will choose to terminate a pregnancy and some won't. If you feel you can't offer support to one who has had an abortion or is considering one, that is your choice but please do not attack the person who brings the problems to us or anyone who offers them support. I am a vegetarian. Would it be appropriate for me to post insisting that others also adopt my beliefs and call anyone who eats meat an animal murderer? No, it wouldn't be, anymore than anyone should be saying we should all be some specific religion.

Please keep things civil and please remember this is a thalassemia support group.
Title: Re: When 2 thal minors want to have children.
Post by: Danielle on August 02, 2006, 02:38:19 AM
That was an awesome post, Andy.  I couldn't have said it better myself. :thumbsup  You always manage to explain exactly how I'm feeling, but put it into MUCH better wording.    :happyyes

I think we've ran this topic into the ground.  If Jemma or anyone else has any questions or concerns on this matter regarding Thalassemia, and want to discuss it in a civil manner, then by all means continue.  However, if the conversation is just going to be a back and forth bashing contest, then Andy and I may decide to lock the thread to prevent further arguments.  I'd like to think that we're all mature enough to not have to resort to that.   ???

So, please, retract your claws and play nice.  :biggrin
Title: Re: When 2 thal minors want to have children.
Post by: Miaki on August 02, 2006, 04:28:00 AM

As we see battle of the words get heated up... I must say I am more than happy to see these issues be addressed by Andy and Poirot as sometimes they get burried but they are hard issues that need to be taken into account at some point and no better time than this. I have managed to travel to Europe and seen the highs and lows of the economic state of countries and also the highs and lows of patients living with thalassaemia.


Remember why we are all here and remember treat one as you would want one to treat yourself.

Miaki
Title: Re: When 2 thal minors want to have children.
Post by: Isis on August 02, 2006, 09:04:39 AM
First of all hats off to Andy    :flowers........
 :clap
I would not have been able to retain my cool in this thread either. I do not like anyone telling anyone what they should and have to do. Wonderful posts by Andy.  :cheer :cheer :cheer
Did not know you could also gunfight the 'ride 'em roughshod'...cowboys   :wink

Whoa....this is a support group mate. We support everyone, esp. the ones with the real pain (which includes the negative outlook and approach). The ones you WRONGLY call with a 'chip on the shoulder'   need the most support btw. Let's  not discriminate people for "decrying their existence".   :hmph   


Poirot, I feel that you are just picking up on words and twisting them....and failing to see the genuine meaning and intention behind them.
 You did the same with Mushto's post, about not putting any more thal majors in a life of continuous pain. Yes, the daily needle pains them a lot more than it pains us...........they are very slightly built.
Before you all pipe up ....just know the facts. Maldives has an 18% rate of thal trait. The children do not live beyond 20's and not because desferal is not available. It is just that they do not have the "will to chelate" stemming from lack of will to live.

 
Quote
Finally, Andy, when you talk about Maldives:

Oh, I am confused now. Why DID you go to Maldives, then? I thought it was to tell the Maldivian Thals that life was worth living, and that they could do that, with help.  To tell them to chelate, so that they could live. And for Shilpa to relate her real life experiences. Sure, you  listened to them  ..... but did that make you change YOUR message about life?

YOUR message in life ...what does that even mean ?
What is the connection with Maldives, I fail to see the link Poirot??  What has Maldives got to do with changing one's message in life. That is an irrelevant connection you made just like the flaky Phoebe from Friends. 

 
Quote
You couldn't tell that to any "normal" person either, so why bring it up in this context. Life as a bed of roses probably only exists in the life of the idle rich in P G Wodehouse novels, and even then Bertie Wooster had his troubles.

 So do not say "In any case noone's life is a bed of roses." Ye ye we know that.
Does "everyone" start out from birth though...with a lifelong condition that requires treatment. Where many of them feel from childhood that they may die anytime, yes even in today's day.
  People forgot to tell Jemma that her child will also have to hear many hurtful comments from other kids.  That every thal major has to  watch many of their thal major friends die.  Yeah ALLLLL of it could happen to anyone........but at least they have a fair odds. With thalassaemia there are more certainities and less odds.

For some thal majors....It is just plain worse than anyone here can begin to imagine.  A crown of thorns and a bed of hot coals. Anyway, noone gets a bed of roses ?  Right. :rotfl 

Why doesn't everyone just go tell them not to be negative, before sitting here and glorifying thal major. Yes being positive is good....but not by glossing over all the bad parts. More by stating the good along with the bad. Keeping a balance.

We, the people who handled our thal major deserve credit................that does not make the debilitating disorder ( as I heard described in a medical text) any less painful. The joy is in our attitude, NOT in "having the thalassaemia major".

 
Quote
I couldn't AGREE more with you. You change attitudes by presenting positive examples, by talking a positive line, by boosting morale and saying this is not the end of the world.


What you are saying boils down to "it's all just about the attitude"...what an erroneous simplification. All the positive spirit talk is just lovely but one needs some "even breaks" before that can set in.....suppose someone does not  have your spirit and cheer......are they supposed to be denied a better life?? Talking positives is all very well and needed, but noone wants your intangible talk, what do you have to show to them tangibly.........the poor man will say first feed me....then talk of positive attitude.  You can't tell him, "you do not deserve food just because you could not get it for yourself".   

 
Quote
I am not saying and NEVER said that you stop listening to the negatives or seeing the negatives, but it is MUCH MORE important how you deal with the negative when you come across it. Isn't that our objective? To provide SUPPORT and GOOD CHEER when people are tired and can only see the negatives? I would be very sorry to see this objective lost.


Err,... Hello Poirot,  that is exactly what we did do..... you are stating the obvious.

There is no point in theoretical analysis and dissections, without having gone out there and practically experienced all that you have been commenting about.

Regards,
Shilpa.
 
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on August 02, 2006, 10:10:22 AM
Poirot, I feel that you are just picking up on words and twisting them....and failing to see the genuine meaning and intention behind them.  You did the same with Mushto's post about not putting any more thal majors in a life of continuous pain.

Look, Shilpa, you will excuse me if I do not want to be part of any project to create a new Aryan race .......
As far as intentions go, you know what they say ...... the road to hell is paved with good intentions.

Poirot
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on August 02, 2006, 10:12:37 AM
Talking positives is all very well and needed, but noone wants your intangible talk, what do you have to show to them tangibly.........the poor man will say first feed me....then talk of positive attitude.  You can't tell him, "you do not deserve food just because you could not get it for yourself". 

Is THIS what you think I was saying in my posts?

Then, I am really sorry that I could not be more eloquent.

Poirot
Title: Re: When 2 thal minors want to have children.
Post by: Poirot on August 02, 2006, 10:14:06 AM
Well, Poirot, I think you successfully distorted each point I made.

Fine, Andy. You do not understand me, and I distort what you are saying. Enough said from my side.

Peace.

Poirot
Title: Re: When 2 thal minors want to have children.
Post by: TruBlue on August 02, 2006, 02:52:24 PM
Hello again Jemma,

I’ve spent a lot of time considering this issue today {Six hours driving at  work afforded me the luxury} and discussed it some more with my wife and even my daughter when I arrived home. My wife made some great points, but being only 3 yo  my daughters input was pretty limited.  I did learn a lot about whoever Captain Feathersword from the Wiggles is though??? Anyway, I too have lost a child and can certainly relate to your pain.  I believe I have allowed the pain of my own lost child to cloud my judgement regarding the decision you are faced with and attempted to appraise it again in a fresh light.  It has proved incredibly difficult for me and the basic result of my soul searching is that I am eternally hopeful that I will never be faced by such a momentous decision.

I tried assessing your situation from as many objective perspectives as I could visualise and soon arrived at the conclusion that my own daughters passing has clouded my ability to make any type of unbiased assessment or suggestions.  Arriving at this conclusion helps me in some small way to deal with the passing of my own child and leads me to conclude that I owe you an apology.  I am in no position to offer an  opinion or advice that will not simply collapse into an outpouring of raw emotion.  I am completely and inherently unable to proffer an unbiased opinion on this issue due to my own experiences and, thusly, should have refrained from commenting.  For my error in judgement I apologise to you.  I apologise to for my part in your very serious post becoming derailed to such an extent in a pointless duel with the administrator and his lieutenant…oh no….that’s definitely going to earn me a vitriolic three page monologue in point form  :wink  Oh well, they don’t seem to change much in form or content so I guess I can just refer back to an earlier one? Yikes! There’s another two pages! Maybe I do shoot myself in the foot sometimes? Or put my foot in my mouth….and then try to shoot it? {You can just hear the cheers for that one} Anyway, I must apologise for the weak humour as well { A nervous defence mechanism I guess}

In closing, I don’t envy you your position at all and though I feel that I am in a position to address some points such as community pressures, and actually living with someone who has Thal Major. I feel my emotional closeness to the subject matter due to the loss of my own child precludes me from contributing further and should have dissuaded me from doing so in the first place.

I wish you and your family all the best for the present and the future, and you have my unqualified apology for the antagonism I exhibited.
Title: Re: When 2 thal minors want to have children.
Post by: Danielle on August 02, 2006, 06:14:24 PM
I apologise to for my part in your very serious post becoming derailed to such an extent in a pointless duel with the administrator and his lieutenant

 :waiting

I'm going to ignore that comment.   :rotfl

Anyway, I'm sorry about your daughter, and I realize now why this subject is touchy for you.  I'm glad to see that you apologized, though.  :)
Title: Re: When 2 thal minors want to have children.
Post by: jemma on August 02, 2006, 11:03:59 PM
Dear TruBlie,

I am so sorry to hear about the loss of your daughter.  Your apology has been accepted.  I realise that coming onto this forum and talking about this issue will upset some peolple and that is fine.  However i believe that it is a very important issue and i have been amazed that it wasnt bought up earlier.  I hope i have opened up the doors for other couples in our position to talk about there views openly and honestly without being attacked.

I wish you and your family all the very best....  Take care


Title: Re: When 2 thal minors want to have children.
Post by: Andy Battaglia on August 03, 2006, 03:45:45 AM
Jemma,

I am very sorry that you were attacked in this forum. At our previous group at MSN, we had someone come to the group who had already had one abortion of a thal major and this type of reaction was absent. We are normally a very caring group of people and aside from a couple members who continually seem to believe the whole world should live by their standards and religious beliefs, we have only seen people trying to help each other.

I am going to say something and it may offend many people but I am already quite offended. I am utterly disgusted by the behavior of some members of this group in relation to this thread. When people, most of whom profess strong religious beliefs, feel justified in attacking a woman who has been through her own personal hell and is obviously still learning how to deal with her loss, I simply don't understand it. How does this fit into the concept of Christian compassion? I don't think this concept is unique to Chistianity and I do feel that the concept of compassion is a universal one held by most if not all religions. I have just gone back and read through Jemma's posts and I see no justification at all for the comments and attacks that have been made. I see a woman who came to us for help and who was very confused about what course of action to take and who is also trying to deal with a great loss.

People, this is a SUPPORT group. There are countless forums online where you can go and vent about abortion or any other issue. This is NOT one of them. We are not here to attack or condemn each other. We are here to help each other. As I said before, this group is based on tolerance. If you think tolerance is some politically correct rubbish, I will be more than happy to show you the door. I will also ask that you please check your attack mode at the door. And mostly, I will ask that you THINK! Think about the effect your words will have on those reading them. Have you said anything that others can find something positive in? Have you tried to help or have you added to the problem? Have you been honest or have you left things out in order to support some agenda?

Jemma, I want to get back to your original posts. I have been involved with this group for several years and I have seen posts from many parents of thal majors and also frequently communicated by email or on MSN with many parents of majors and never have I heard a single parent say they were overjoyed to find out that they had a thal child. In fact, the experience has been quite the opposite. I have most commonly heard the word devastated to describe their feelings at discovering their child's condition. Almost always the parents will ask about the possibility of a bone marrow transplant. I would ask you to read Khalifa's posts about the year spent in Italy for his son's bmt and then ask yourself why parents are willing to put their child and themselves through this dangerous life-threatening ordeal in order to cure their child of thalassemia rather than live with thal. Over the years we have heard many stories of parents who feel overwhelming guilt for bringing their children into this world and have also heard of the guilt many patients feel over putting their parents through the life of caring for a child with thal. Read through the many posts here and at our old MSN group about thal and the health problems associated with it. Early on you mentioned Lisa. I will tell you something. In spite of how wonderful modern care is, Lisa suffered for over two years before she finally passed away. The pain in her final months could not be alleviated by any drugs. The helplessness felt by the people around her, including myself was overwhelming. I have seen what thal has done to her mother's spirit. She lost both her husband and daughter to thal. I wish so much that I could do something to lessen her pain and grief but the only thing I know to do is carry on this group in her daughter's name in the best way that I can in Lisa's spirit.

Today I talked to a young man who calls me his dad and he told me that he can't find a girlfriend. He is 26 years old. He asked me why no girl would have him. I asked one thing...thal? He said should he just die? Let me ask. Is this the voice of someone with a chip on their shoulder? I am currently talking to at least half a dozen other thals who have the same experience. And each and every one of them has asked this question of themselves. Should they just die? What does life hold for them if not even human companionship? This needs to change and believe me, I work hard to convince these people that life has value and to teach everyone that thals are just as deserving as anyone else. As part of my role in the world of thals I have counseled many thals and far too often I find people who see nothing positive about their lives and sometimes even embrace death as a release from the pain of their lives. Before anyone calls these people names because of what is perceived to be nothing more than a bad attitude, I say wake up! This is the reality of thals in so many places around the world and denigrating them may make someone feel more potent in his own life, but it does nothing to help anyone and is quite frankly demonstrates an attitude of one who could use some sensitivity training at the least. 

I had hoped that you would hear from some parents of thals and hear their stories, because you have all along been asking about whether YOU can handle being a mom to a thal and only YOU can judge if you have the strength and willingness to do so. For us to judge for you is impossible. We can only try to present an honest picture of what it is for a parent to raise a thal child. I feel very few of the posts in this thread have actually tried to do that. You might be surprised to learn that some of the people who posted have parents who have never come to terms with their own child's thal.

Jemma, your decision is up to you and your husband. It is not up to us and never was or will be. I realize you do understand this and hope that every single member of this group can also understand that. I do hope you will continue with us as long as this is a question in your life. I promise that I will do my best to offer support and encourage others to do the same.
Title: Re: When 2 thal minors want to have children.
Post by: §ãJ¡Ð ساجد on August 03, 2006, 06:37:51 AM
Hello everyone!

Why are we going around in circles?!?!?

I thought this issue was settled! :huh
Title: Re: When 2 thal minors want to have children.
Post by: TruBlue on August 03, 2006, 09:02:15 AM
Its not settled until Andy decides it is apparently.  Might be best just to let him have the final word and leave it at that?
Title: Re: When 2 thal minors want to have children.
Post by: jemma on August 03, 2006, 10:02:26 AM
Well i thought since i started this thread i might as well be the one to finish it off.  I appreciate everyone for replying to my post.  I understand this was a very emotional issue to all of us and i thank you for your input.  In future may i suggest as Andy said that people do not attack another person because no one knows exactly hw that person is feeling.  I cannot tell you how many times i have read some posts that were either attacking me or being really sarcastic  and then i could not get no sleep.  However the beauty of the internet is that you cant see the emotions and that is what made me feel "safe" (cause i did not have to face you}

Special thanks to Andy for speaking so obectively.  You have really helped me in more ways than one.  I think you are doing a great job.

Dannielle, I wish you all the best of luck with your studies and also thank you for your help.  You gave me a good insight to the life of a Thal major person.  Before you i had heard only good stuff and i actually started to believe that the genetic counsellor was lying to me.....  Thank you for sharing with me your insights...

May God bless you all.....

Lots of Love   :hug