Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: Zaini on September 17, 2008, 04:28:07 PM
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Hi everyone,
It's a bit difficult for me to explain my feelings in english,but still i'll give it a try,as this is a very important question for me and your views and answers means a world to me.
The thing is as you all know we have two kids, a daughter and a son,daughter with thal intermedia come major (due to her transfusions),and son who does not even carry thal trait.Now there is a constant debate going on between me and my husband about attempting for another kid,really it's a bit hard to talk about as in our part of the world women are not used to of talking about these things very openly with everyone,but as i told you earlier,your views means a lot to me and your advices have always helped me through.
So it's very natural when you love someone you would love to extend your family with him/her and have kids,and i really love kids,but a bit hesitant to attempt for another kid due to obvious reasons,i know we have CVS available,i went through that when i had my son,but it was like living in constant fear untill he was not tested for thal,which was after 6 months of his birth, everyone told me that you have had CVS and the report came negative so there is nothing to worry about,but i was unable to forget about it totally,i always kept thinking about the 2% chances of mistake.I know it's a very small percentage but really i was scared like hell after what happened to my daughter,at that time nothing was clear and thal really looked like something totally fatal,now i know much about thal thanks to this forum and am totally satisfied with how is my daughter doing.
But still i get scared if i think about trying for another kid,what if report comes negative but report is wrong?
And what if report comes positive? ???Would it be easy for me to just abort my own baby? I know there are wonderful couples with thal minor here,what do you say,have you ever thought about extending your family,after two kids? Sharmin?Manal? Eveyone and any one.Your replies and views are really valueable for me.
Thanks in advance .
A very confused Zaini. :)
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Dear Zaini
When my son was first diagnoised i wanted so much to have a third child, but for a BMT ( i know this is a rude thinking) and i spent 6 months searching about best places for PGD until i realized how difficult & dangerous the consequences could be. So the idea was cancelled though i still believe that i should have continued ( i mean the baby not the BMT ).
I too love children and in the past i wanted to have 4 :rotfl :rotfl but this dececion is not only about thal but also about other variables. To cut it short if i am in your place and everything is okay for me to have a new baby, i would use every possible means to make sure that th baby is free of thal. For me in particular,it is hard live this same situation again. I hope you understand me right, this has nothing to do with thalassemia or how to mange it or anything of this sort but it is me. After my son was diagnoised - no matter how strong i seem or how much support i have here from you or how i believe that there is a hope for a cure--- but i am so fragile from inside and too weak to deal with this situation again. My heart aches everyday and my nature is that i don't accept half solutions either white or black and knowing that thal always lies in the gray area because of its nature makes it hard for me.
There are others who have the ability to deal with it but me is very hard. Again i repeat, it is not the illness but it is my character that is unable to deal with thal again. So i agree to have another baby as long as i go through all the necessary tests
feel free to ask about anything else
manal
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Dear Manal.
I have to aplaude you, this was the most honest posting on this particular issue, I'm so proud of you, It takes courage for a person to come out and speaks her mind.
Dear Zaini it would be difficult to place myself in your shoes, I know you are facing a real "Moral dilemma"
There are no easy way,you need to decide, you need to know if you can live with the consequences of your chosen plan of action,
Listen to your heart and do what is best for yourself and your family,
whatever you chose remember there is no turning back.
Either way good luck and may you find clarity and a peace of mind,
I dont think any woman can tell another woman how? why? or when?
from Kathy the "dinosaurs" :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
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Hi Zaini,
It's a matter of personal opinion between you and your husband. You and him know what's better for both of you than anyone else and if there is a conflict between both of you; then you and him both have to give a logical explanation to convince each other. Listen to what he says and discuss your concerns with him to convince your point. Similarly he should do the same and try to convince you with his explanations.
I know you are a knowledgeable person and will successfully prove your point to him as well as understand his.
Decisions have to be made mutually in a marriage and both sides should have each other in confidence.
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Thank you Kathy but i hope that i am correctly understood and i didn't offend anyone. I am just concerned about the continous anxiety parents live each day especially in our part of the world. I am not against having another child but i should make use of knowing the fact that there are chances of having a disease so i should do my best to avoid it. It is the same advice we give to couples when they know they have a thal mutation running in the family.
So again Zaini, my opinion is that if all other variables are okay for you go ahead as long as you can do necessary tests. The problem does not lie in this i guess, but lies in... if the test became negative, will you continue the pregnancy or not?? and my answer to this is that if i were you i have to get a religious explaination if this is halal or not. You know in our religion it is okay to abort before 120 days of pregnancy as long as the pregnancy threatens the life of the mother or if the baby has a disease that is fatal at the time of delivery , but thal does not threaten the life of a mother nor fatal so this does not apply here. Other fatwa that i heard says that it is okay to abort before 120 days too if the disease is hard to mange and would be difficult to deal with but it is a must before 120 days too and this applies to thal.
So if i were you i would make sure of the fatwa first to see if i am faced with the idea of abortion , shall i continue or not. Personally my heart goes with the first fatwa (and God knows better) and therefore i wouldn't go through pregnancy this way as religiously i don't believe that abortion is halal in case of thal as it plays no threaten to any live (mum or baby) that is why when i wanted to have a baby i thought right away of PGD because only healthy embroys are the one that are implanted so that makes the idea of abortion out of discussion, but still PGD needs a lot of skill and a lot of money.
Zaini, i am just brainstorming as your question raised a lot of mixed feelings in me and again i hope that you understand that my opinion rises from my own thinking and according to what i can deal with :hugfriend
manal
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As far as the fatwa is concerned I've read a few and they agree on one point that abortion is allowed if the birth will effect the child's whole life in a negative way like a disability and one of them even had the word Thalassemia in it.
I know that the modern treatment can make you live life to the max but personally I think if you entangle your child in a life long series of pain then that does effect the life in a negative way. One might think that they can manage it but what if there are problems later? So, it's wise to evaluate all possibilities beforehand rather to repent later.
Zaini, it's totally up to you and your family. Can you live with another Thal child or will it be o.k to abort and try again later?
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Dear Zaini,
As mothers of thalassemia children we are all faced with so many issues that other people don't have to.
I have a thal child - who did amazingly well until 8 years of age. He had no complilcations, his ferritin was usually 900. Suddenly, he developed the antibody issue - although it may be resolved now, I cannot tell you my anxiety over the last two years.
I personally love and appreciate the children I have, I have no regrets about having the thal child I do have. He is a happy, brilliant and wonderful boy. I am also glad that my other child is healthy because it gives me a sense of relief and normalcy in my life. I personally need this. Like Manal, I cannot bear the thought of having another thalassemia child because I would not be able to do justice to myself and my children. Thal children need a lot of time and patience and I can't imagine giving more than one thal child the attention required. Secondly, I worry how my daughter would feel if so much of my attention were to go to her thal siblings. It is a full time job already trying to make sure they each get the attention they deserve.
Because of the uncertainty of thalassemia, I am counting my blessings that my son is healthy and generally has done well with treatment. Having another child with thalassemia is again is an unknown, not knowing how that child will do with transfusions, chelation, emotionally etc. I have become so paranoid lately because of what I have been through lately that I am driving myself nuts! Every little change in my kids scares me to death.
This is my personal opinion. I know some parents have unbelievable courage but I don't think that I have much more courage to spare. I do think that PGD in an ideal world would be a great idea, but as Manal said it is expensive and it needs to be done with great care. It can be taxing on the mother's body and not to mention the possibility of multiple babies! It is all a matter of what you can handle.
Awaiting the results of amnio is very difficult - as you mentioned and can be very draining. As much as you prepare yourself, aborting your child at the time results are available is devastating because by then you are already in love with you baby because it is already moving. It can fill you with pain, anger, guilt and regret.
As far as the moral implications - no one can judge you as long as you are true to yourself. We are in a unique situation, trying to do what is best for us an our children. People can judge you either way - for aborting or for not aborting a thal baby. I have been given the third degree from people for not doing an amnio in my first pregnancy because I am "causing" my child to suffer - essentially telling me that he should not have been born. :mom The only morality that comes into play here is your own and this is what I have to say to those that judge us :lalala :lalala and :nana :nana !!
Once you have considered all of the issues you personally have and what everyone else has brought up - I am sure you and your husband will make the best decision. There is nothing more beautiful than having a healthy baby, I guess we just need to be prepared for everything. Don't forget your own well being and need for happiness and peace of mind.
We are all on you side Zaini, whatever decisions you make my love and support are with you.
God bless and may any child you have live a long and healthy life - bringing you joy!
Love,
Sharmin :hugfriend :hugfriend :hugfriend
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I really can't tell you how i feel,I am overwhelmed with emotions,and please no one offenede me,not in any way.i'll try to answer and again question each and every one seprately.
Manal,
After my son was diagnoised - no matter how strong i seem or how much support i have here from you or how i believe that there is a hope for a cure--- but i am so fragile from inside and too weak to deal with this situation again.
That's the sme situation with me,i know i say every time that i am happy that my daughter is doing well and everything,but still it hurts me from inside that she has to suffer even that much, and God knows how will she take it when she'll be a teenager and grown up and able to thin k by herself? who knows who will she blame? her fate? her parents? for being ignorant of their thal their whole life,who knows? So facing another kid with thal would be like comitting suicide for me...NO i can't handle it, not at allIn no way, i'll go nuts and probably end up doing something horrible to myself.
Kathy,
You are totally right,there is no turning back,that's why i am so worried and confused,and it's not like i am getting any younger,my biological clock is ticking and plus i have another gift in the form of PCOS,So either way i have to decide it with in two years.
Manal,
Religious point of view is also a matter i am worried about,i have heard that you can abort a baby if he/she has a diseaese,but my question is "can I do that?" it's a bit hard to decide,and on the other hand facing life with another thal kid is also not possible.
Sajid,
There is no conflict,the thing is we always wanted to have 4 kids,and that was obviously before my daughter was diagnosed,believe me at that time my husband was so devastated that he though we can't have kids anymore,but then we had our son ,Alhumdulillah normal,and that has gotten him strong in thinking that we can still have healthy kids,and about the abortion thing,he says that if it's religiously allowed ,that you can have an abortion with in first 16 weeks,why are you worried then,just like that,he is so straight forward in his thinking,it's me,who is faced with the deliemma that can a mom abort her own baby? Am i cruel to even think about that? You tell me,you are thal major your self,how do you find life?and do you think that even after so many advancements in medical science ,is it fair to expose a kid to thal major,i am not saying that in a bad way,but who am i to talk,i am not a thakl major myself,i can be happy thinking that my daughter is doing well,but how do i know if she considers it "doing well",if not now then in coming years?
Sharmin,
I also have no regrets about the thal child i have,and i totally agree that i am really happy that my son does not even carry thal trait,and of course who can bear the thought of having another thal child.My husband also said that we'll look up for IVF and PGD,but i didn't know about any concequences.i thought it was a totally safe procedure,stupid me.
It's just that me and my husband,we both love kids,My sis in law just had a baby boy,her third baby ,and i was all over him,and i was in self pity for days that we can't even plan a baby like any normal couple,but then in the end i gathered myself trying to be thankful that atleast i have two kids,there are couples who spend their whole lofe trying to have a baby but to no avail.
I don't know what's written in fate for me,what am i gonna decide,and it's not like anyone is forcing me,my partner will totally respect my decision,but i love him and my heart aches when i think that he want to have more kids ,and we can not do that without facing risks.And i love kids so much,that when ever i see any little angel i long to have one in my own arms.
I think i have whined enough, and i know i am, being abrupt now,just know that your replies and views means a world for me,please pray for me.
Zaini.
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wow!!!!!!!!!!!!!!!!!!!! wow.
I am so so proud of this forum in reading these recent postings from the young mothers, indicate that we have some really good intelligent and articulate young women,with lots of class and intergrity, :clapcheergirl :clapcheergirl :clapcheergirl :clapcheergirl :clapcheergirl :clapcheergirl.
Zaini Another option available to you and your husband is "Adoption."
The positive about this method you don't have to compromised your health and you can have a choice of having a thal free Baby, Worth considering.
Remember there is always away of achieving once dreams. Be happy and good luck my friend,.
Kathy :hugfriend :hugfriend
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Zaini,
I completely understand what you are saying. My husband and I often think the same thing - because we both carry thal minor it seems nothing is simple for us. It really doesn't seem fair that we have to make such difficult choices. Thalassemia has really placed limitations on our family planning.
I encourage you to gain information about PGD. If you decide to go this route, you may attempt to have a match for you daughter. Although you may not want for her to have a transplant, you can store the cord blood so that she has the option if transplants become more routine and safe someday.
Again, do your research and there may be a solution if you want to have a bigger family.
Sharmin
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Thanks Kathy and Sharmin, :hugfriend
For your generous replies,to tell you the truth i am feeling emotionally drained now a days,trying to think and re think what can i do? and what i can't do?
My husband really gets upset when he sees me in depression,as he always says that sometimes some things are really out of our hand but we can still pray,he says we had our doubts before our son,but by the grace of Allah we went through it,HE gave us His blesseing in the form of a healthy baby?Have you lost your faith in Allah? and then i feel really ashamed.
Are there any couples on this forum who ave more then two kids,i mean while being thal minor themselves.
Can anyone tell me about the consequences of IVF/PGD?
Zaini.
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Googled IVF,It's scary :-\.
Zaini.
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Zaini,
Sometimes I think we're all crazy for bringing more kids into such a messed up world, but as a parent, I do understand why we do it. From your posts, I think what you really need right now is to just take a break from thinking about more kids. Give yourself some time to digest the different possibilities and to relieve the pressure. Think and pray. Relax and ponder. You and your husband need to seriously analyze one thing. Are you sure you are physically, emotionally and financially able to care for another thal child? One thing you do need to take into account is, despite having faith, many Muslim families do have more than one thal child, as do many non-Muslims. We are given the capability to have children but we are also given the capability to gather information and make decisions, and a decision as important as this should never be made under intense pressure.
If your husband pressures you about this please tell him to take a :chill and drop it until you both are 100% confident that the choice you make is one you can live with.
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Well said Andy.As a mother of two thal interm children,I wish i had not gone for the second issue.But alas it is all destiny - look before you leap.At times my heart bleeds for my sons,I am to be blamed for it.I wish I could give a normal life to them.A thought for a third issue really scares me-a complete no no.At the end who does'nt love kids.But-------------
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Andy
A spade is not spade, its a fork :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl,
I'm only being cheeky.we need to have some fun . why not.
Umair are you there?????????????????????.
Kathy
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Hi Kathy ;
oh yeah, i m here again ...
Actuly , in startings of this thread i won't to participate in it ... then i got some super infection in my stomach and to the last 2 days ( 40 hours ) i was on fasting bcoze of the pain ..and then bcoze of uncomfortness my Blood Pressure came in the scene and i got headache .. i missed an iftaar party as well bcooze of my stomach :( :sad ... thats why i didn't post much in last 2 days ... i went to a Dr last night .. now i m on medicines for stomach and feeling good ... No Pain ... but the fasting of 2 days playing a role in my overall situation and now i m feeling a little bit of weakness but i m super fine to post message here on thalpal .. dont forget to pray for me ..
as you invited me to have my share in this post ... while i was thinking, wat to say here in this thread . i found only some quotes, these r not related to the thread... these r funny birthday qoutes :
(1) No wonder I'm unhappy - My twin forgot my birthday
(2) The most effective way to remember your wife's birthday is to forget it once
(3) When I was born I was so surprised I didn’t talk for a year and a half
(4) A diplomat is a man who always remembers a woman’s birthday but never remembers her age
i think its enough to say hahahhahaahahh :rotfl :rotfl :rotfl :rotfl
Best Regards
Take Care
Umair
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Umair,
see, i noticed your were gone for a little while :biggrin :biggrin
I hope your stomach trouble clear soon,
hahahahahaha :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Thanks I like (2) its really funny ,just the thought of it make me laugh.
kathy
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Hi Kathy:
Thanx for remembering me and observing my absence .. its a good feeling that someone has noticed my absence .. even my absence was realy short ... A Special Thanks for remembering me and for the wish as well ... i m feeling a little fine now .. no pain ( bcoze of pain killer ), but have to continue my medicines ( for stomach ) for 1 more day ....
i was googling for qoute to wish Ahmed ( Manal's son ) birthday , when i found these qoutes .... and here you want a laugh to decrease the intensity of this topic soo i decided to share these quotes ...
Take Care and keep saying hhahahahahaha :rotfl :rotfl :rotfl
its an exercise for lungs and it also good for blood circulation ...
sooo... ha ha ha
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Hi Kathy :
i forgot to mention abot the reason of my high blood pressure and here it is all ...
Note : sorry for poping up this thread, but i m tired to editing again and again & again thats why i m sending it in new post .. in (1) i m talking about what happened to me in last 2 days and in (2) i m having some fun to realese the tension of those 2 days .. be happy and dont mind ...
(1) believe me its true , i forgot to mention about my unsusual heart beat that cause my high blood pressure and headache ...
my heart was missing the ryhtme ( sometimes low beats and sometime high )
(2) a song for that situation came in my mind is ( All i neeed is the ryhtme divine, lost in the music n your heart will b mine ) and something like that wow .. :rotfl :rotfl ... i m missing the full lyrics but its Ricky Martin :rotfl :rotfl i think... yeah, he is brother of Damin Martin ( ausi cricketer ) :rotfl :rotfl and the cousin of Ricky Ponting wow wat a famous family he has .. super family :rotfl :rotfl ..... :rotfl :rotfl :cheer
Take Care and keep saying hhahahahahaha :rotfl :rotfl :rotfl
its an exercise for lungs and it also good for blood circulation ...
sooo... ha ha ha
UMAIR
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Dear Umair,
Thank you for the laughs :biggrin
I hope you are feeling better. Take good care for yourself little brother - we miss you when you are sick and not able to join us here!!
Sharmin
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HI Sis :
thanx for the wishes and regards ... and also for remembering me in my absence ... please check your post in which you talked about your son having bruises over desferal site .. i have posted there something a few days ago .. i think that will b helpfull for you ....
Best Regards
Take CARE
umair
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Andy,
Yes you are right,as always,now a days i am really wondering what's gotten in to me,as after my son was born,i was really sure that now i have a daughter and a son both, and now we should not risk anything anymore,i don't know what happened to that decision of mine,where i lost it?
It's not only my hubby who wants more kids,but to be honest lately i am the who is thinking more about it,my husband says we have all the time in the world,you don't have to worry about it just right now. And of course we can not live with even the thought of another thal child,neither emotionally nor financially,i know we both have to sit and talk,well,my husband being not much of a talker is another thing,but anyways he is not pressurising me for anything,i just have the tendency to get depressed over anything,sometimes i think i should seek professional help.
Sah,
If it's not very personal ,can you please tell me from where do you belong?and was your first son diagnosed before your other son was born? if yes,then did you not go through CVS or something?
Kathy andd Umair,
Thanks for humouring everyone :) .
Zaini.
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Zaini,
My daughter recently told me about your question and I thought of responding but when I came online and saw the news about Sajid I was heartbroken as he was one who provided inspiration and hope for others, he will surely be missed.
When we got married, we wanted 11 children, all girls!!!! My first and only child was diagnosed shortly after birth with thal major. When I found out that the only cure for this condition was transplant, I tried desperately to get pregnant again. The issue about whether the child would be thal also was banished as I knew that the testing was 99% correct...and that was 18 years ago.
Dont crush your dreams, there are lots of options available now. I also tried IVF back then, it wasnt all that bad.
If I could I would still go for it now.
Best of luck
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Hi Roanna's Mom,
It was so kind of you to take your time and respond in this thread :hugfriend i am really thankful,This decision is ofcourse a difficult one,and i am really not decided yet,or may be i should say we are not decided yet.A few days ago me and my hubby had a brief discussion about the situation and thought it was better to take our time and think about the options we have.
I went through pre natal testing when i was pregnant with my son,IVF is a really expensive option for us,i don't know the exact numbers,but a couple of years back a friend told me that it's about 10000 dollars.
Can i ask you why were you unsuccessfull when you tried for another baby,as you said you also tried IVF,what went wrong?
Thank you once again :hugfriend
Zaini.
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Zaini, that is very expensive , here in Egypt it is around $ 2000 and with the same international sucess rate
manal
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Zaini,
I can speak with experience, IVF not only expensive but bears a great risk of failure. Each IVF would cost around $5000 in Canada but the success is not guaranteed. One can try many times to get pregnant but it's all depends when it is going to happen.
Regards
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Manal,
I didn't search it myself,but my friend took one of her friends to concept fertility centre a couple of years ago and she told me this,i don't know if she was wrong.
Sometimes when i find enough time i keep reading oldest posts on the forum,i read a member jemma once posted similar question about pregnancy and she also stated that in her country IVF cost 8000 $,i don't remember where was she from.
Well i think the ticket to Egypt is about 7 to 800 $ :) .
Canadian Family,
What you stated is the very same i read on internet every where,if also contains a great risk of other internal problems a woman can face,so if we ever opted for another pregnancy,i don't think IVF would be my option.
I have a son and a daughter both,so generally speaking i should be satisfied,but i want to give my daughetr a sister,i know it's not for sure that i'll have a daughter,but i wanted to give it a try,for her sake,as she would love to have a sister,as she often says so :) .
Thank you for your input.
Zaini
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The success rate of becoming pregnant in IVF is 30 to 40% and this is exactly the same rate in normal conception but in normal usually couples are not aware of this fact. Usually in IVF doctors implant 2 to 3 embroys in order to increase the success rate as each embryos has a chance of 30% , so in this way success rate increases as there are more chances that any of the embroys will continue. That is why in IVF usually there are twins.
Zaini, i know the cost because my cousin is specialized in IVF
manal
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Thanks Manal,
I am planning to visit the centre in a couple of months,to know the facts and my options.
Zaini.
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Zaini,
Happy to be here with everyone. I always see this group as part of our family since most of the posts reflect what we all feel.
The success of IVF totally depends on the indiividual. In my case i only tried it when everything else failed and it was really too late for that attempt. I had endometriosis, a condition which affects the lining of the womb. Roanna was my miracle as my stage, when finally diagnosed was bad. My doctors had actually advised against trying but my daughter was my first and only concern and transplant seemed like a miracle.
When they forced me to have a hysterectomy, I was badly depressed for months as my daughter's future seemed bleak. it got worse when we visited the doctors in London to find out that she was severely iron overloaded in her heart and liver.
The medication too which was then prescribed was not available or approved in my country and it was an almighty struggle to obtain the approval and therapy for her. Finally we got access to the drugs- ferriprox and desferal which has now brought her back to the normal ranges, thank God!
Most of the procedures are very expensive- IVF etc and it depends on what your dreams are. I can also tell you that it is hard to attempt one and dont get positive results, but remember if you are perfectly healthy otherwise your chances are much better than mine ever was.
I hope that this helps you to put things in perspective. Best wishes for the future.
Romaine
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Thanks a lot Romaine,
Every person who has replied in this post has helped me in one way or another,i am weighing my chances and re locating my options,i'll proceed with everything people here said in my mind.
Thanks again,
By the way, i love your name :) .
Zaini.
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Hi Zaini
I spoke to many doctors in the conferece about our concern. In fact I think I annoyed one of them as well by being honest, I was enquiring about HLA match and they were going on and on that it is unethical to bring a child only for sole purpose of bMT. I said if I have a guarantee that my new born can actually bring a cure to my son then only I will embark on the journey of getting pregnant thru IVF or else there is no point. Cos I feel that it is too much of responsiblity and I will be compromising my time with my children existing if I bring another life in this world. But if I get a gaurantee that the hla is 100 % and it can cure my son it is acceptable to me. Also it will be unethical only if I dont love my new born as much as my son and daughter and a mother loves all her children equally. It would be un ethical if I dont give a good life to my new born which is not the case, so why is it unethical to talk about a cure.
Anyways the crux of the matter is that IVF can be done but it is not easy and they will have to give u fertility drugs and there will be numerous tests in terms of injections when you get this done. So it is quite a difficult procedure as in to extract ova and then put you on hormones to increase fertility and stuff. Basically it is not an easy besides the cost. harvesting ova is painful with needles and stuff. Plus your time wil be compromised it is a long drawn process.
However if you decide to go thru this then i suggest that you actually do the HLA matching in terms of PGD. no point going thru the IVF and not doing PGD. If you do PGD atleast in future you are sure by some miracle if there is a cure you have a 100% match. Having said that you still should assess the situation cos IVF is a painful procedure. I know we mothers can take any amount of pain for our kids but you please explore the PGD as well . It could be additional cost but trust me it is going to be better, just in case if there is BMT possibility in future atleast you have a 100 % match.
Have a detailed discussion with your centre when you go there and dont be shy. Cos whatever you do it will be the best decision for your kids.
All the best.
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Thanks Puja,
For so much concern,Right now i am between things,i haven't decided anything yet,and yes IVF sounds scary to me too,when my daughter was born,although she was born normally,but after going through doctor's pokes for nine months i was so scared that after her birth i felt like i'll throw up if any one touched me,so i can understand IVF is totally another story.So i don't know what would i do yet,Are you planning too?
Zaini.
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Nope Zaini , I am not. Unless I get a gaurantee that it is going to be a cure for Prat. I straight away asked the Doctor and we said what if we dont do anythign and there is a cure in future and it is too late for us to give birth(Manal was with me too). But it seems you know if the cure comes along the lines of gene therapy then there is no need for HLA. As for BMT it is really really scary and I dont think it is essential for all of us to even consider putting our kids who are doing well with other stuff to go thru the pain of BMT. Unless there is a BMT wihtout chemo therapy but this is another story ????????, which also looks bleak at the moment.
As of now I am not planning anything, also I have learnt in life, we plan something and look for something and if God doesnt want it - a totally different thing happens. I read this quote somewhere : GOD answers all the prayers, sometimes his answer is a " Yes" and sometimes he answers a " No" and sometimes he says " YOU GOT TO BE KIDDING ME".
So I have left the options open. Lets see.
luv
me
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Hello everyone,
I came across this link, check it please
http://typicallyspanish.com/news/publish/article_18439.shtml
manal
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Zaini,
Just a short note to let you know that I also found out that it is possible to actually choose the match from the egg stage, guaranteeing as well that the child will not be thalassemic. i was actually communicating with a specialist on the states about this and was amazed as to what can be done now.
What you do have to rmember though is that while transplant can mean that the child is cured, there is always the risk that the patient can just switch back to being major without warning. in addition the chemotherapy and side effects from transplant also causes sterility in patients.
I know that there are options which sounds fantastic but it is really expensive as well. Maybe you can also google the following address for further information:
http://www.genesisgenetics.org/?gclid=CNKkyJ6TrJYCFR8cEAod42zBzg
Hope that this is useful.
Romaine
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Hi Romaine,
Actually i am not planning for a transplant,but every one here was advising me that "if" i choose IVF as my option,and it's a big if ,then i should make sure that not only my baby is thal free but also genetically matched with my daughter,so if in future,there comes something safer then BMT,or a safer form of BMT,we'll be able to opt it.
But the thing is that i doubt that any such genetic matching is available here in Pakistan,and may be if it is,then there are no banks to save cord blood,i'll search it in detail anyway.
Thanks Manal :hugfriend For the link,i don't think there is any ethical problem in bringing a child in world to cure another one,they'll be siblings and parents would love both of them in the same way.
Zaini.
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Hi Zaini
in case you want to write to the Doctor I was talking about from India. Who is an expert in BMT and PGD. His email address is
mammen@cmcvellore.ae.in
He is good, I will search on the net and give you the complete address and where does he practice, cos I was not able to get in the short meeting.
luv
puja
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Hi Puja,
I did correspond with Dr Chandy when my daughter was diagnosed,i sent him my daughter's and our HLA reports but he told me that our reports were not totally matched,He practices at Christian medical college and hospital a.k.a CMC in Vellore.And yes he is the best,they have very good results with BMT.
Zaini.