Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Cari on April 14, 2009, 01:12:26 AM
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Hello,
I am 28 yrs old and 19 weeks pregnant with my first child. My husband and i were both aware that we had thalassemia minor 5 years ago. We knew that we were going to deal with test results at some point but the actual shock of finding out is something i really never prepared myself for.
It took us a few years of doctors telling us we could not even get pregnant naturally due to other complications before we finally had the shock of our lives in January. It was a blessing for it to happen for us and we embraced it...even though we knew what was to come.
I found out the baby has major this morning. All i have done is cry. I have all these thoughts are running through my mind. I need to speak to someone who has gone through this. My husband and my family have been really supportive but we are all trying to figure out what kind of life our child is going to live. We are trying to figure out how to deal with this reality. We are trying to figure out if it is selfish to put our child through so much...
Has anyone else found out they have a child with thalassemia major during an amnio? How can i deal with this? Please help us.
Charishma
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Hi Charishma,
You have found what is probably the best site on the internet regarding thalassemia. The message you will find here is a fairly positive one and you will learn that the outlook for thalassemia patients has changed drastically in recent years. Thalassemia was formerly classified as a fatal blood disorder. In the US today, thalassemia is now listed as a chronic manageable condition. For starters I will request you read some posts on this site, so you can get a better understanding of the current outlook and treatment for thalassemics is today. I would also ask that you take a look in the gallery and under member photos, take a look especially at the pictures of little A playing hockey. As a ten year old, he is the star player of his hockey team. There are also two thal major women that are members of this group, one in her late 30's and the other 40, who will soon be giving birth. For the 40 year old, it will be her second child. I know they will both tell you that they are very happy their parents decided to give birth to them. In this group we try to stay very current on what is happening in new developments for treating thal and in some ways, we are the leaders in showing parents and patients how to deal with thalassemia.
Please read the posts at http://www.thalassemiapatientsandfriends.com/index.php?topic=2751.msg26480#msg26480 and
http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.msg13006#msg13006
If you do random searches on the net, you will often come across outdated and inaccurate information about thalassemia and this will scare you. Yes, there are many problems that thal patients confront and treatment is a constant, but a patient in today's world can expect a long fruitful life as long as there is full compliance with treatment. With the introduction of oral iron chelators, treatment has become much easier to comply with, and much less intrusive. There are many reasons to be hopeful, as new developments in the approach to treatment are coming fast and some are in trials at this moment. We have many members with young children and they are finding that dealing with thal in their children is not the nightmare they thought it might be and they could not love their kids more than they do. I don't know anyone who has said they wished they hadn't had their children. You should also be aware that the US has some of the best thalassemia centers on earth and excellent treatment programs are available.
Your decisions are for you and your husband to make and all should respect your decisions. Whatever happens, you will have our support.
I expect some of the parents in our group will have more to add.
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Dear Charishma,
The information that you have received this morning must be overwhelming for you right now. After reading your post, I looked at my 10 year old son (lil A) and this is what I saw as I tucked him in to his bed. A very healthy looking little boy, who did not want to go to bed yet because he was having too much fun - and he does not want the day to end. His best friend spent the day with us and they played in the park, laughed and teased my daughter and her friend all weekend. Lil A loves his life very much - he has such a thirst for knowledge, and a gleam of curiosity in his eye - he lives and savors every moment of every day. My prayers are that he is always happy and healthy. He plays ice hockey, basketball, soccer, he was chosen as academic student of the year in his entire school last year - and most importantly he love to laugh and tell jokes. Lil A is very much like most other thal major children that I know - they are very healthy and normal - if their disease is well managed. Other children on this website - lil Z, Ahmad, and others - are also very bright, intelligent and wonderful.
I also have adult friends who have thal major, one a 41 year old woman who is a mother of 3, and another 27 year old man who is the father of a beautiful little girl. They are both educated and have great careers.
Regardless of what decision you make, we are here to support you. If you do decide to continue with your pregnancy please don't feel selfish, because children with thalassemia can live very normal and healthy lives. I will say that having a child with thalassemia is a great responsibility. Here are a few things that will keep your child healthy:
1) Be sure to be seen at a comprehensive thalassemia center
2) have genotype and phenotype testing done before your child is transfused.
3) Be sure that your child's hemoglobin is kept above 95
4) Be sure to begin chelating your child early so that iron does not accumulate in the organs
5) Have your child eat a very balanced diet and supplement with vitamins that we can tell you about on this site
6) Ensure that your child gets regular exercise
7) Help develop your child's self esteem and understanding of thalassemia - so that he/she can take care of him/herself.
There is every chance that your child can live a full , healthy and happy life.
Regardless of what decision you make about your pregnancy, we understand that this is a very difficult decision. Being 19 weeks, I know that you have very little time to firm up your decision. We support you in whatever you decide and we will be here for you. I hope that this information is helpful to you.
God Bless,
Sharmin
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Hello Charishma, :hugfriend
Welcome on the forum,first of all,rest be assured that whatever deceision you and your family takes,we'll always be here to support you.
I have an eight years old daughter,Little Z,the one Sharmin referred to,you can see her pictures in the gallery,when she was diagnosed,which was when she was three years old,i remember i kept thinking how selfish i am,despite being anemic whole my life why didn't i investigate further what was wrong with me,neither my husband nor me knew we were thal minors until our daughter was diagnosed.But now when i look at her,i don't see anything abnormal about her,she is an intelligent and bright child,she won first position in her annual sports day at her school twice in a row.
As Andy said,treatment for thalassemia has drastically change since last few years,its not a fatal blood disorder anymore,especially for those who live in countries where medical facilities are widely and easily available.
If your child comes in this world,what you can do is just be there for him/her,and be there with a positive perspective of life,with today's treatment a thal major can live a fulfilled and happy life,at least i am looking forward with a positive approach for my daughter,i hope that one day she'll have a successful career,will marry and have kids,and i live in a country where medical facilities are not that easy and cheap.
One of our thal majors member who is in her 30s,Cherianne,has a quote written as her signature,and i love it "Thalassemia is not a burden,its a lifestyle ."
Again whatever decision you'll take we'll respect it,please keep us updated.
Zaini.
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Hello Charishma and welcome to the site,
I know how you feel right now cause every parent in this group had this moment before. I just want you to know that having a thal major child is a big responsibility and a challenging thing, but with love, care and good treatment you don't have any reason for not having a normal life. It is difficult but managable. In order to decide, you have to learn and know much about thalassemia cause knowledge is power as we always say. Read as much as you can and you will find in this site all the infomation you will need about the management, the challenges and the life style.
I believe that your baby will be very normal and able to do anything that other children can do. Regular transfusions, chelation and growth monitering will keep your child healthy and normal like any children of his age. In fact, many parents say that by time they forget that their child has thalassemia other than when the have to go to the hospital for transfusions.
Thalassemia will not prevent you from enjoying anything that any other parent can enjoy with their children. Thalassemia children can do anything.. walk, talk, play, get educated, go to college, get married, have children and live a normal life span. They even become grand parents but again this is all because of tremondous care.
I know that this will not ease your pain and anxiety, but by time I hope that it helps. If you decide to continue with your pregnancy one important thing to know it to ''normalize'' your attitude towards your child inspite of this disorder because our children are the mirror of our thoughts and beliefs. Your child will amaze you when you have faith in him/her. If you believe and work that he/she will live a healthy and normal life, this will happen. It is so hard and challenging but it can be done
Wishing you all the best - and we are all here to guide you in raising a healthy thalassemia child together. Please keep updating and be sure that we are here for you in whatever decesion you take
manal
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Hello Charisma!
:welcome2
be assured that at thalpal u are in very good hands.
We are here to support u.
my best wishes and prayers for u and ur family.
Take care.
Pareeshay.
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i thank you ALL for taking the time to reply to me. You have NO idea how emotional it was for me when I saw so many replies to my post. I could not sleep last night and this morning i can't stop crying. You are all so strong and I want to be this way. All of your stories are giving me so much hope but i am still so scared and shocked. I keep thinking how can this be happening and how am i going to get through this.
Andy, i have read all the information you have provided - thank you so much. I just got a call from my obgyn who has no idea what it is i'm going through. what killed me is that he asked if it meant the baby will not survive. I told him i wanted to talk to a hematologist and so one has called me from Winnie Palmer here in Orlando Florida. I have an appointment today at 3:30pm. Doctors name is dr. Jiusti.
What kinds of questions should i be asking? I'm so scared i can't think right now. Do you know of any centers or doctors in Orlando that i can contact? Even if not that are there any doctors that specialize in this and will talk to to me over the phone.
I am really scared and very depressed. I don't want to hurt my baby but i cannot stop thinking about all of this. The main thing is that i can't stop thinking of the worst. I have a million what if's in my mind even after seeing all of these photos of your children. How can i convince myself that my child will be as healthy as this.
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Please contact Eileen Scott for information on thal friendly hematologists in the Orlando area. I do believe that this may actually be at Winnie Palmer. (The people at Arnold Palmer's were kind enough to help keep my son alive when he was 3 years old and suffered a severe asthma attack while we were vacationing in Melbourne. I think quite highly of them). You should register with Eileen anyway, so please contact her ASAP.
Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999
Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org
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Hi Charishma,
Believe me most of us can understand what you are going through,i know its very hard time,this decision is not easy to take,its good that you are contacting a hemotologist,he will be able to give you more technical details,but please remember one more thing that since you and your partner you both are thal minors,in every pregnancy there will be a 25% chance that baby may have thal major,unless you go for IVF which takes time and is not cheap at all.
Try to read as much posts on the forum as you can,try to understand thalassemia,and after that whatever decision you'll take we'll always support you and we'll be happy to have you with us no matter what happens,no one will judge you :hugfriend .
Take care,
Zaini.
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Hi Charishma,
Please type thal minor pregnancy into our search engine and read the relevant posts. You should be taking from 2-5 mg folic acid daily during the pregnancy. Your hemoglobin level should be watched closely, as some thal minors will need a transfusion or two during the pregnancy. Your doctors should also be aware that some thal minors experience clotting issues during pregnancy so this should be watched for. Often, one baby aspirin a day is recommend to help avoid this. I would also recommend that you take a good multivitamin. Do not take iron unless it has been shown that you are deficient through iron studies.
I would also suggest you contact Children's Hospital of Philadelphia for a consultation at the Comprehensive thalassemia center there. Early treatment is key with thalassemia and the earlier your child is in a comprehensive program, the better it will be. This is probably the closest to you of the Comprehensive centers and Dr Cohen is highly recommended. An annual visit to a Comprehensive thal center is a definite must. The difference it will make is huge.
Children’s Hospital of Philadelphia
Appointments, consultations and referrals Contact: Marie Martin, 215-590-2197
Philadelphia, Pennsylvania
Director: Alan Cohen, MD
http://www.chop.edu/consumer/jsp/division/meet_the_team.jsp?sid=26685
Physician Referral Service 1-800-TRY CHOP (1-800-879-2467
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I just came back from a consult with a hematologist at Winnie Palmer. The facility has only 2 other Thal Major patients but they were very kind to me and they seem to know what they are doing. They are also going to put me in touch with one of the other patients mothers. One of the doctors of the facility said he trained at the Philadelphia center Andy was talking about.
We are still in shock about all of this but we decided before going that regardless of what happens we are definitely keeping our baby and will face the challenges to come.
All of you have really put things in perspective for us. This site and your individual messages have really overwhelmed my husband and I and we are truly blessed to have so much support from people who do not even know who we are. If it wasn't for all of your positivity, I would go crazy. Honestly, just your quick responses to my messages have kept my spirits up. I am really thankful for all of you and i look forward to getting to know each of you more.
Please continue to give us any advice or information you have that you think will be beneficial for us to know. Please continue to guide me through this so that I can stay positive and give my child everything that it needs.
Charishma
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Dear Charishma,
I wish you and your baby all the best. God bless you and your family with happiness and good health. With proper treatment, your baby will be very healthy and successful in life. Treatment for thalassemia is getting better each day, and most of the complications that you will hear about occurred a long time ago when treatment was not as advanced - or due to negligence. Most problems can be prevented, and things should go smoothly for you and your baby. We will be here to guide you and help you in any way that we can. Please feel free to contact any of us when ever you need advice or support.
Please be sure to take good care of yourself now, for the baby and for yourself. Eat well, rest and relax as much as you can so that when the baby is born he/she will be healthy and strong. Also, when the baby is born you will need to be healthy and strong so that you can take care of your baby. Remember, the more relaxed and matter of fact you are about the thalassemia, the better your child will deal with it.
Best of luck and god bless,
Sharmin
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Dear Charishma,
I am sure you will never regret your decision. My son, Hassan was diagnosed as a thal major at the age of one. Today he is almost three, no different from any non thal child of his age. Transfusion days are still a little difficult on us as his veins are so difficult to find and Hassan could win a WWE title on those days. Infact the last time I was in the hosp the nurse in charge requested me to remove his shoes. She said he had kicked her on her face once and she didn`t know where he would target that day. So many children are born each year with special needs, autism, cerebral palsy, downs syndrome etc.. etc.. I am glad my child has only thalassemia which can be easily managed with a few pricks. This is your first pregnancy, enjoy it to the fullest. We are here to support you and your right decision.
take care
maha
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Dear Charishma,
I was in a similar situation like yours about six months back, when I reliazed after my son's birth about his condition, I did not do the amnio test like you did. It is very hard to believe the truth, even today I cannot believe sometimes, but once I read the topics here in the site (which I do everyday) and got to know people like Andy, Sharmin, Zaini ,Narendra etc, I felt much better, they have been great source of strength to me, personally, reading thier topics gives me the energy and strength to fight.....today my son is a beautiful toddler, almost 7 months old, looks and behaves as a seven month toddler, very naughty and keeps us busy....we all adore him.
Though I am scared at times but I always believe and pray that he will be fine with the new treatments and lead a normal life like other children.
It is very hard to believe, at the begining but slowly you will be normal and come to terms with it. The question I used to ask and still do it, "why me and my baby, God?" But my mom keeps telling me you are not the only one, which is so true, so we need to support each other (as everybody does here in this site....wonderful people here),,,I wish you all the best. Please take care of your health and the baby...Get good rest and eat well... let us know if I can help you in any way. We are lucky to be here in US, as the doctors are so good and caring. I wish you a healthy pregnancy and a beautiful baby.
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Dear MomofABabyThalMajor
why me and my baby, God?"
I had the same question three years ago when my son was diagnoised and used to ask it every moment of my life until one day one of the memebers here just answered it and told me '' And Why Not You'' .....
To tell you the truth, i had no answer but from that day, i really stopped asking this question because by time i got to know that God does not give us except what we can endure and deal with, it could be hard at the beginning but at the end we will do it. This does not mean that we don't get our weak moments --even after many years of diagnosis-- but you will soon overcome them with hope and the unconditional support you will find here. Have faith that a cure will be there one day and even if it is not there, we have all means today to offer our children a wonderful and normal life. These are gifted children, all they need is more extra care and by time things will be as normal as anything in our lives.
Please do share your thoughts and concerns, wishing you and your baby all the best
manal
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Charishma,
I am really happy to hear about your decision :hugfriend :hugfriend and believe me like Maha said you'd never regret it,life can be challenging anyways,with or with out thal,being a mother itself is a challenge,so you'll do great :hugfriend.
The scenario for thalassemia has totally changed with all the treatments coming along and it no more a disease,it a disorder,a very manageable one.
Keep in touch,
Zaini.
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Dear Charishma
Wishing you and your baby all the best and to have a safe delivery. :goodluck
What is so important as Andy and Sharmin had mentioned earlier is taking care of your pregnancy now and taking all the supplemtnts needed to assure that your health and your baby's health will be in their best.
I believe that knowing this condition before delivery is much better cause you will get the chance and the time to understand things more clearly and be prepared. Always remember that knowledge is power. Keep reading as much as possible in our different sections, ask questions and you will find us all here day by day clearning things up and giving you all the support you need.
Have faith that you and your baby will be just fine. We are all so lucky to have our children born at the age where there are treatments that help them to be raised as any other child in this world. All you need is dedication and determination that you are going to raise a healthy child, believe in your baby and yourself. I know that maybe now you will not be able to fully accept this fact but you will be able to give you baby all the care he needs and you will be so proud of him
Please be sure that we are here for you
Take care
manal
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Hello Charisma,
I was thinking all about your post yesterday, and I thought I would give my personal advice, what I would have adviced to my sister. It may hurt several people in this forum.
I did not know I was carrying a thal major until after birth. During my pregnancy, I almost lost my baby, and I was very very sad. But that sadness is nothing compared to the sadness I am experiencing now, after knowing.
My baby is 7 months old now, already had 4 transfusions, today getting 5th. He dreads being pricked, he has been poked from 12th day onwards. I am constantly worried about him and definetely want to go for BMT. Looking for centers for IVF so I can give birth to another child who is HLA matched with him. Looking at centers which will perform BMT. I live near Philly and go to CHOP and I even am considering moving to Oakland CA, because it is the best hospital for Thalassemia care.
Why I am saying all this is , why do you want to put your child thru such pain, knowingly. Yes, Thalassemia can be managed with regular transfusions, 12 hour chelations, n number of medicines, etc. but read thru the site, and look at all the problems people have faced during and after transfusions. The side effects, the number of medicines to take, the extreme amount of pain and stress to the baby and to you. You are very lucky to have known about this problem in the initial stage. Please dont put your child to so much pain after birth. You can have more children later who are healthy, and or opt for IVF. Your child is not born yet. It will effect the baby physically, psychologically to know that he is not like other children. It takes extreme mental strength on your part and the child's to rise above this. And I really admire Sharmin , MomofaThalMajor and many others in this site who are so strong.
And again I am extremely sorry if am hurting people in this forum. But I feel, knowingly any mom should not bring a Thal major child. Children should inherit parent's good looks, intelligence, and may be wealth. Not such dreadful,horrible diseases. Please save the next generation.
with apologies
MomOfShreyas.
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Mom of Sheryas,
You have the right to say what you think,no one is gonna judge you on that,i am just sad that you are taking a total negative perspective to the whole situation,i know its hard i am not saying its a piece of cake,but to tell you the truth,does it happen everytime that every child inherits good looks,intelligence and wealth from his parents? wouldn't world be more like a paradise if that was the case.
But no,because we are here to spend life with challenges,because we are human beings,we have the ability to face them,i do not intend to offend you at all,i totally respect what you are thinking ,because i know i would have thought the same if i'd have to see my kid being pricked at this early stage of life,but believe me there are so many people who have been through that.
Just think about it that if a baby is born normal,but then he accidentally gets into an accident God Forbid,and looses any part of body,then what would we do,what i want to say is life is not safe all the time,to live you have to take the challenges of life,either its you or your baby,there are no guarantees in life,any one healthy as a horse can die anytime,no one knows when he is supposed to just stop living and go ahead,we see that in our daily lives,don't we? So there are no guarantees,life is the most unpredictable thing enjoy it as much as you can.
Children learn from their elders,my daughter has never shown any kind of sadness or remorse about hat she has,neither has Little A or Ahmed or many other thals we know on this forum,may be because they haven't seen their parents regretting about it either.
Please i do not mean to hurt you my friend :hugfriend just try to think a bit positively ,i am not saying its not a hard time for you,but hard times become a bit easier when faced with positivity,and you child will learn from you to be positive and take life as normal and enjoy it to the fullest,and let me assure you one day you'd be proud of him and he'd feel the same for you :hugfriend .
Please forgive me if anything i said offended you.
Zaini.
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I'm really not sure what to say right now except for that I do have faith in God. I am very depressed because I know what is to come for my baby is not going to be easy for them. I do keep thinking how can i do this to them and that is what is keeping me so unhappy right now.
In the same breath i think - why would God give me this child if he didn't want me to have it?
I have severe endimetriosis, reoccuring ovarian cysts, low egg count and my husband and i were not compatible. I was literally killing all of his sperm. We were going to look into IVF in February and found out we were pregnant in jan.
I cannot say that I'm so THRILLED with my decision that I want to JUMP for joy at this moment. I cannot say that I do not question my decision every second. I cannot even say that I am enjoying my pregnancy at this moment or if i will in the weeks to come. I am still crying and still scared and still very very depressed about everything. Every minute i'm wondering if this is the right thing to do. Every minute i'm wondering if there is going to be light at the end of this tunnel.
Regardless, I KNOW myself and I know I will not be able to LIVE with the fact that I did not give this child a chance. I will be even more miserable than i am now. ESPECIALLY after so many people have touched me with their own stories. I think that if majority of the people on this site would have told me --- 'no...don't do it...its horrible...and your child will be unhappy, unhealthy and not be able to live normal' -- maybe that would have changed my mind.
If I knew for a fact that this disease was going to KILL my child at an early age...that would have changed my mind. I swear the only thing I EVER heard on Thalassemia major was that children don't live past a certain age...and that it why I was having such a hard time. I didn't want to give birth to a child and lose it so quickly.
Now, i can see that this is not the case and all i need now is the strength that is needed to come to terms with all of this. As Zaini said - children learn from thier elders. Once i face this reality for myself - i know that I can get my child through it too. I guess the positive is that I have a little more time to figure it all out before the baby gets here.
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Hello Charishma and welcome to the family.
I'm very happy that you have decided to continue with your pregnancy.
I'm now 26 years old and sometimes I think about the big amount of things that my parents and I wouldn't have experienced if they'd had decided not to have me. I have been happy all my life and I never thought about thalassemia when I was a child. I just lived my life as a happy child and thalassemia was not a hitch for live it that way.
As you have seen, you'll find on this forum all the information you need at any moment. Andy, Manal, Zaini and the rest of us are going to help you as much as we can.
Welcome again and do not hesitate of writing all your thoughts.
Kisses,
Laura.
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Dear Charishma,
My son, lil A, has posted on the forum - to read his posts you may go to:
http://www.thalassemiapatientsandfriends.com/index.php?topic=1814.0
The antibody he talks about came about because we did not do genotype and extensive phenotype before transfusing him. I urge you to ensure that you have these tests done as soon as your baby is born - and insist on having them done even if the doctors tell you that they are not necessary. Were it not for the antibodies that emerged, because we did not do these test, thalassemia would not have been a problem for us. Even with the antibodies, we are managing and he will be fine - but if you can avoid it please do.
Best,
Sharmin
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Welcome on Board. :welcome
I am 22yr with the rare anemia pyruvate kinase deficiency. I dont have even a boyfriend, so I probably can't take part of that discussion. However, my future boyfriend must undergo tests -. But to be honest. I dont think I will ever be a (biological) mother.
momofShreyas, I do understand your view. I sometimes wish that bmt was possible. Whatever you do, please keep me up to date.
I am only child because my parents did not want to put an other child with this on the earth. I do know families who took the 25% risk and have an other child with pkd. i must say that I never have met a person with more severe pk def. than me. I have had transfusions since the day I was born and I still got them. I usually get them every 1 - 3 weeks. (Some silly nurse destroyed my own blood when i was been given a change transfussion plus a hemalogist who had the wrong graph in mind so it took 3yrs to find out what type I had; sadly funny) When I was young, I was every week a few days in the hospital. But you see. it is a completely different situation. None did know we had this nasty gene in both families. I doubt of my parents would have stop the pregnancy if they knew.
Life will be hard in both ways.
:hugfriend
p.s. motherofSheryas, I must say that it helps me sometimes to look at more ill people. Then I think: OK, I still got some luck. Give it a try. And dont feel quilty, xx
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Charisma,
The best decision would be yours and your families. After all, you are the one who has to live with the effects of the decision you make.
Did you and your husband get genetic counselling done? If not, that would be a good step as they open up a different avenue with a lot more information which shows you both sides of the coin.
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Yes, we had genetic counseling done before having the baby. I knew the risks...at the same time....i had a lot of faith that it would work out.
We were still looking into doing IVF with PGD testing because we were told that it would be pretty impossible to have a child naturally anyways so you can imagine our surprise about the pregnancy.
I had a hard time getting here and now i'm here and life has taken a turn...life is ironic.
I'm getting more and more confused.
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Charishma,
It's a miracle that you got pregnant. And yes, raising a thal major child is quite a challenge, but they are every bit as much a child as any other child and the blessing of that child will dominate your thoughts as the years pass. Yes, it is very hard to see your child being repeatedly pricked with needles but it does get easier as they get older, and even with the problems that that do crop up, you will still love your child as much as anyone loves their child. Life isn't easy but we need to recognize the true blessings that do take place and accept them, even when there are strings attached.
MomOfShreyas.
I think you need to look to the future. Your child will not always be a tiny baby and it does really get a lot easier as they get older, and with each new milestone, I think you will find yourself being as happy as any parent, when you see your child take his first steps, starts his first day of school or learns to ride a bike. At some point you will learn to reconcile the pain with the happiness that you see your child finding in life. You'll stop asking why did you allow your boy to endure so much pain and wonder if there could be anything that makes you happier than his smile or the pure joy he gets out of hugging his mom. Why am I so sure? Because I have seen this same exact thing with parent after parent, and being a parent myself, I do understand how dreadful the moment can be, but also how completely fulfilled you will be when that same child walks across the stage and is handed his diploma. I have seen my 3 year old son near death and put on a helicopter to be airlifted to Arnold Palmer Children's Hospital in Orlando, while not knowing if he would still be breathing by the time we drove the hour+ to the hospital, each moment scared beyond belief about our son's future. At that hospital I saw a needle being poked into my boy's artery for a carbon dioxide test...a test that can make a grown man cry, but there was no choice and he endured it twice. After a young childhood that was one rushed trip to the emergency room after another, who would have believed this same boy could possibly grow up to be an athlete, a top performing student, a musician, and frankly whatever this 16 year old boy chooses from life? The point is, no matter how much pain my son had to endure and no matter how much medicine he had to take with all sorts of side effects, it was all worth it and I would never wish that he could have been spared all the pain if it also meant he was never to enjoy this wonderful adventure we call life.
This discussion has brought back a lot of memories of when Christine first came to our group with so many of the same questions. Christine and her husband also knew the risks but decided they would chance it anyway. It was a very frantic frightening time for Christine, but I heard from her early this week and when she talks about Lauryn, she is so happy and proud of her little one, who is doing quite well (I know Sajid is smiling down at Lauryn and proud to know that his words always offered comfort to Lauryn's parents), and whose ferritin is steadily dropping with Exjade being the only chelator she has ever known. Time passes and today's struggles fall away as tomorrow's joys take their place. Please have faith in your ability to confront each problem as it arises and also have faith that in the end you will look at your children and see the blessings that they truly are.
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Dear Charishma
Although I have never been pregnant I just wanted to let you know we are praying for you! I cannot imagine how difficult this must be. I am not good with words, but just wanted to offer you a little encouragement.
We can understand some things, not quite the same though...my husband and I adopted a little girl from China about 2 and 1/2 years ago. She is our only child. Within 3 and 1/2 months of having her she was diagnosed with B. thal Major.
Our dear one started transfusion in Nov at 2 and 1/2 yrs old. She is doing great and I cannot even begin to imagine my life without her. She is beautiful, extremely smart, and quite active. The Children's Hospital of PA is where we go to get treated and the treatments have just become a normal part of life for our little one. As a matter of fact, she tends to think everyone gets them. Her life is as normal as any other child. She is very healthy and happy. Transfusion days are just another day for her (although we do tell her ahead of time when we are going) and she loves seeing the doctors and nurses she knows. She adjusted so fast to the transfusions, it was just amazing.
The Lord blessed us with a wonderful child. We are so grateful to have her. The irony is....on treatment days it turns out to be another family day. Of course, we would have preferred to have different circumstances, but looking on the bright side it is another day you spend with your child.
I am not good with words, I just wanted to tell you that things do get better. We will pray for you.
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What a beautiful message ocwoodmanp :clapcheerboy
I commend you and look up to you. I completely agree with you. Thalassemia is not the end of the world, especially in this day and age. There are not disabilities, no limitations for a thal born during these times. Your daughter is so very lucky to have your positive attitude. How any child, especially a thal child turns out depends on the parents attitude. Thalassemia does not have to be a burden and thalassemia children are certainly not a burden, they are the greatest gift. They are beautiful, gifted, responsible and loving children - and it is our job to remember that and remind them of everyday. You are an amazing parent, god bless your family.
love,
Sharmin
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Andy,
What an amazing post. Your post summarizes my experience with my son - as well as most thal patients who have come to treasure their children regardless illness. In your case your child was suffering from Asthma - in our case it is thalassemia. Regardless, it is not easy raising children - and most thal children never face a crisis like the ones your child faced in dealing with his asthma. We have so much to learn from you and your experiences. Thanks again for the inspiring message.
All parents will have tough days - and parents of thal patients will have them too - and that is why we are here, to hopefully help everyone get through the difficult times.
Sharmin
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Dear Charishma,
You've made the right choice and -as Andy put it correctly- you've also found the best site on the web.
Our daughter Sophia is 3 1/2 yrs. old and has (what is effectively) beta thal major.
We knew of my wife's thal minor status, so when she became pregnant I was tested immediately. It was more of a precaution, since I'd been tested for the trait as a child and it had come in as negative.
"Negative again" came in the result. Nevertheless, when Sophia was about 12 months old, blood tests led to blood tests that ultimately revealed that she was indeed beta thal major -I had an unusual trait called Lepore- that often goes undetected by mistake.
Of course we were devastated.
But then we went and found out what this really means.
My point is this:
My wife and I considered going through legal proceedings against the lab that gave me a clean bill of health when I was tested during the pregnancy.
Clearly they had been negligent.
We're not suing.
That mistake was the greatest thing that ever happened to us. Period.
Had we known that I was a carrier then the subsequent amnio would have confirmed Sophia's condition and -we've concluded- we would have come under a great amount of pressure that might (and I shiver as I write this) have made us consider the pregnancy.
Thank God for that mistake.
Sophia is our wonder. She's beautiful, (this isn't simply a proud dad speaking, we've had several offers to have her in adverts), extremely sociable, intelligent (she can more or less read, and is now working on the writing), kind, and expressive.
She is without a doubt the most amazing thing that ever happened to us.
I can imagine how you feel. And it is normal and expected.
But I assure you there is nothing that should sway you from the belief that your child will have a normal healthy full life.
Be happy.
Congratulations on your pregnancy!
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Andy,
Your post brought tears to my eyes,thanks for being a guiding star for us all.
InGreece,
I am really happy for Wonderful Sophia,i wish her luck ,health and joy in future :) .
Charishma,
I am not saying it'll be a steady journey,yes you'll stumble,fall,but then you'll pick yourself dust off and move on,because it will be your child you'd be living for,and as Andy said he'll become such an immense source of joy for you that you'll forget every sorrow,wishing you the best my dear,we are all here for you :hugfriend .
Zaini.
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Hi Charisma.....
Lots has already been said,but wanted to just let you know my view as well.....
Whatever the decision, it is tough....
I was in a dilemma whether or not to opine...since you have already made up your mind....
I can imagine your roller coaster of emotions-with the joy of conceiving despite the odds and then this diagnosis...
Life isnt easy anyways...so you have to be strong no matter what. No doubt that the scene is better now and is improving each day...
Yet many times when I see my son, I think that had I known I probably would not have liked to give birth to a child knowing that he has this condition. Sometimes I feel guilty for not having been aware before. I feel that I could have prevented him from being so. I am not saying that he is not normal but why even let him be subjected to even minimal trouble...This is a very personal opinion.I dont know exactly how you feel but can only try to understand... When I see my son on the days of transfusion and every night when it is time for the pump for chelation, I do wish that I could turn back time and maybe have done something had I been aware...
You have the advantage of knowing it right now and so can be prepared for it. Yet dear, it is not easy to see your child suffer even a little...this is not just about thal but about anything....it is difficult to see our kids in tears....
I know that to discontinue the pregnancy is a difficult decision too,because I had to go through this when I conceived my daughter.We had to wait 20 weeks to confirm whether the baby is thal-free and whether or not the HLA matches...In either case not matching, an abortion was to be considered...even the thought shook my very soul. But it did work out in our favour eventually, so that’s that…
Each child is special and it is a blessing from God… there is nothing compared to the feeling of knowing that love can be so special…so you are definitely blessed…
So as of now I can only tell you to be strong and accept all that your decision brings in.You just have to develop your strength and patience because you are the one your baby will learn everything from-about how beautiful this life is and how it is we who can lead it even better.
It will be easier with us all here, I hope...
All the best to you all...
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Hi Charishma and momofshreyas
As I was reading your posts my little one who is a huge fan of Barney and Friends was singing the I love you song. Today his record is stuck at we are a happy family and he is nearly knocking me from my chair with his great big hug. When I look at him all I can see is a happy and a naughty little boy always on the look out for mischief. I will not say life is a breeze even with thal. It is not but it isn`t that difficult either. Ask a blind or a deaf childs parent, what they would do if a doc tells them your child will be able to see or hear but they would need a prick or two every month. Won`t they jump at this chance? I am always thankful to Allah that my son has a disorder which can be managed and I live with the hope that a no risk cure for thalassemia will be available soon.
take care
maha
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Andy sir, Zaini,
We are all here not by choice. We were not aware of our condition. That is why we accept the fate and deal with it, give our best to the child. Yes accidents can happen and there a chance that a person hale and healthy can be drop dead tomorrow. But we still live for today and future. If it happens by accident or ignorance is one thing. But going ahead with full knowledge is selfishness on the parent's behalf is what I think.
After knowing of my son's condition, it took several months for me to get out of the depression, and understand that the depression is affecting me and my husband. We had to keep our sanity and continue with our lives until the time for treatment comes. But like manojmass says, every moment , I think of where I have done wrong and feel guilty knowing I have caused this to my son. This disease - condition, he did not get on his own, I gave it to him. Now that I know , will I bring another Thal Major in to this world? Can anybody else bring another thal major into this world.
I love my child with or without Thalassemia, and with each milestone he gets naughtier, his personality developing, he has firm likes and dislikes. And may be he will the next Einstein . But more than being a great achiever, I want my child to be happy and live a carefree life. I dont want him to lose his normal innocence and be a regular at the world's best hospitals. I don't like that he is in full bloom on the day of his transfusion and gets paler everyday. I dont like that foreign blood is sustaining his life, like wearing some one else's clothes all the time - only more intimate. The clothes given are "washed" but still they are not his own. I want him to be able to lead his life with minimal assistance, incase something happens to me and/or my husband.
What I am saying is, please don't underplay the Thalassemia. With Thalassemia, the child can seem to be a normal child but there is lot more work and many more factors involved. Thalassemia effects the whole family not just the baby and the parents. It dominates everything else in life. Andy sir, now that your boy has endured so much pain, would you want another child to potentially endure such pain.
Anyway after all said and done, it is the parents who will have to live with the decision. They have to be very strong to care for the baby , get as much help as possible from family members and save more money to be able to treat the baby when the time comes. And have to be very knowledgeable about the disease, things to do/ not to do etc.
Thanks
momOfShreyas
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I totally understand what you are saying MomOfShreyas, it is very true and very natural feeling.
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Dear Charishma,
I really feel for you at this point. You have had a very difficult time getting pregnant and then you were granted this amazing miracle. You have also been told that this baby, who you have waited for so long has thalassemia major.
It is very important that you get all of the different points of view, and I am glad that you are seeing all of the different sides of the story. Having thalassemia major means that your child will have to be poked with a needle at least once a month. I am hearing that children are starting with exjade these days so hopefully your child will not have to endure desferal.
When I gave you advise, I took everything into consideration - including your unique situation, the fact that you have had great difficulty conceiving this pregnancy. If becoming pregnant came quickly and easily to you - perhaps choosing not to continue with this pregnancy and to try again would good advise. This is not because thalassemia is such torture, but some maintenance and needles pokes are required - therefore if you wanted to avoid it completely and have a non thal child it would be advisable.
Considering that pregnancy was not achieved quickly and easily for you, this baby is a miracle. Although the decision is completely yours, for me to urge you to not have this child would be very wrong. My thought process is that, what if you were to terminate this pregnancy and then not be able to conceive again? Then while we watch our children grow up, develop, play and warm our hearts with their smiles - and yes receive a needle poke once a month - you may never enjoy these special moments. How would I forgive myself then? And how would you feel?
Yes, thalassemia requires maintenance - and needles pokes once a month are required. Thalassemia major children lack only one thing - the beta gene on chromosome 11. The do not lack a working immune system, they do not lack limbs, they do not lack a sensory system, they are usually above average in intelligence and talent.
After reading your initial post, Charishma, I asked my son about his life and how he feels about it. He is 10 1/2 years old - so he is not old enough to know everything - nor is he too young to understand. First of all he was so excited about soccer the next day at school, and the floor hockey tournament he was enrolling in that it took a while to get his attention. I asked him "How do you feel about your life?" He looked at me very perplexed, and said "I have the best life!" I asked him how terrible it was to be transfused and to have desferal. He said "the poke kind of sucks, but it is quick and then I get to hang out with you or dad and play at the hospital - it's really cool." "I know you want me to be cured mom, but I think I will miss my thalassemia because it makes me special and the hospital days are relaxing and fun." Then I actually told him that a mom is pregnant and wanting to know if she should have her baby. He looked so shocked that this was even a consideration, but I explained that she is only thinking of the baby because she needs to know that life with thalassemia is worth the inconvenience you to deal with to live it. His answer was "Of course!! My life is awesome. I hope that mom will have her baby - it is only a needle poke! Who cares about a little poke? Mom, did you see the kids at the hospital who can even walk? Some of them can't see or think? There is nothing wrong with me!"
He has been busy lately, but I will have him post as well. When I think about thalassemia, other than the fact that my son gets pokes - I think that it affects me more than it affects him. He gets a quick IV poke - and then he forgets completely. As parents, we feel guilty even if our children get coughs or colds - so it is normal to feel guilty. To be honest thalassemia is harder on parents then the patients - because they get used to thalassemia - it is us the parents who wish everything was normal and easier. We wish that we did not have to worry or think about the disease. I wish everyday for a cure, I won't deny that - but I want it more than he does for my own peace of mind. Also, because of the antibody issue - which is completely avoidable.
As far as children crying, they usually cry during the first 2 years during the IV poke - once a month - as they would during vaccinations. So what? We don't stop vaccinating children, we do it because it is best for them. You should not feel guilty, you should know that you are doing what is best for your child. Again, I don't stress that people have thal children on purpose without regard for their choices - sometimes thalassemia is chosen for us. In my case, I found out after his birth - and in Charishma's case she found out before the birth. But because Charishma had little to know chances of having a baby, the choice is not the same is it is for everyone else.
I don't advise that everyone have thalassemia major children - if it can be avoided it should - but if this is potentially someone's only chance at having a child - the circumstances are different. I also don't advise having more than one thal child on purpose - it can be too much to manage. However, in this day and age, living in the US - having a child with thal - is not torture - it is only a needle poke once a month for gods sake - in return for a normal healthy child every other day. If one has to choose between having a thal major child versus possibly not having a child at all - what should one choose?
Oprah once said, that she heard two women's life stories - one was the happiest, most beautiful story and the other one was the most depressing, sad, horrible story ever. Both stories were about the same woman - it was just about how they were told. And truly, you will live your life the way you tell your story. Our doctor told us that by looking at the parents and talking to them, after the first meeting he can tell how well the child with cope with thalassemia. He said that he personally believes that the disease is easier to manage than asthma, diabetes and many others - because essentially there are no crisis (as Andy can tell you, his asthmatic son had many) - and the child has no limitations. But some kids will grow up depressed, and filled with self pity - other thal major patients will shoot for the stars and think of their thalassemia as one of the things they most do to keep healthy - stop in for a quick "top up" of blood and take their chelator. Some kids will never relax when they get their needles, and they will resent them - some will relax and have great fun helping the nurses find the best vein - and talk about what game they want to play that day.
I am far from perfect, and I have my days - but when I listen to other moms who don't have thal children they do too. Some kids misbehave at school. Some are substance abusers etc etc. Raising children is hard, and there will be challenges. Of course, if we can avoid things like thal we should - but when we can't then we need to accept them and not let it take over our entire lives. My son is NOT thalassemia - thalassemia is something that he has. If choosing between not having a child or having a thal major child - I would still choose having a thal major child because I have every hope of raising him to be healthy and HAPPY.
Charishma, I hope that you are able to make the best decision for yourself - and then to be proud of that decision and not feel guilty. People can make you feel guilty either way - for having this baby or for choosing to not have it. People will scold you for having a child who needs to be poked with needles monthly, and if you choose to not have the baby - people will judge you for aborting a baby who could have lived a great life. The choice is ultimately yours - and what your heart tells you - and it is not an easy one by far. I think it is very good that you have seen all of the different sides of this story.
Best wishes to you,
Sharmin
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Sharmin
Your words reflects my thoughts. You are a wonder when it comes to expessing your thoughts. :hugfriend
take care
maha
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Thank you kindly Maha,
We as parents go through so many emotions in raising these kids. We all want to make everything perfect for them, and we never want them to suffer in anyway. We all have strong moments and weak moments - I hope we can encourage each other in the strong moments - and support each other during our weaker ones. It is so great to have each other get through all of this.
God bless all of the little ones,
Sharmin
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I have read and reread all of these posts and I want to thank you for all of your opinions, thoughts and tremendous support. I live on this site these days and I have also gone back and read many other stories and situations. I dream about treatments you all speak about and worry and then I think about the moments you speak about with your children and I can't wait for those moments.
I know it is not black and white...and I know that my child will go through a lot. I also know that it will be hard on myself and my husband to watch all this. Maybe we are selfish but maybe we are one of YOU. A special couple that GOD has chosen to take care of a special child.
My decision is based on all of this information and it won't change. I have had a very hard time this last week...reality really does bite. I still feel depressed and I just want it all to go away and my child to just be healthy with no problems at all. I know it won't and as i mentioned before i just need to come to terms with it. This is the path I am taking and unless God has other plans for me...I will not play God.
Right now, I can only hope that I can be as strong as sharmin, maha, inGreece, Andy and all the others that have taken the time to reach out to me.
I have been doing my research to get as educated as possible beforehand and thanks to Sharmin for all the good advice on what I should expect and ask for. If anyone has any other details to prepare me for this journey - it will be much appreciated. I am working hard to get myself OUT of this depression and just take care of my unborn baby...and be ready for all that is to come.
One thing i did not tell you all and I feel that I should... I was scheduled for a CVS at 11 weeks. I went to a specialist out of town and if we were to find out that the baby had thalassemia we would have aborted it without thinking. I have never been so scared in my life. I was at the specialist for 3 hours and they were trying to figure out the best way to do the test. In the end - there were TWO barriers...one was a blood clot under the baby's head that they did not want to go through...and the other was my bowel which they did not want to go through.
We left that apptment so relieved but still opted for the amnio. Both of us knew inside that the amnio would make no difference...and we did not talk about it...we just figured that if the worse was to happen...it would just prepare us. Of course...we still believed that everything would be okay and we wouldn't even be put in the situation we are in now. I remember walking into the room to do the amnio and tfehis time feeling nothing but happy to be able to see my baby...i did not have a worry in my mind.
A few days ago - i was frantic. You all know that NOTHING can prepare you for news like this. I did not expect to get this news at all and for that moment i lost myself and i actually considered abortion.
I'm still hurting so much but i'm trying to find myself again. I am trying to be the soldier that my husband says I am. I'm very concerned about our baby and his/her life and just hope I can get them through all of this. My husband, my rock... calls our baby a warrior...
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:hugfriend
Sharmin
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Andy sir, now that your boy has endured so much pain, would you want another child to potentially endure such pain.
I have a lot more to say on this whole subject, but to answer this, yes, 1000 times yes. I would have this same boy over and over and endure it all because this is a boy whose life is well worth living and no matter how much fear and pain I went through, I would accept it all again to give this boy his life. And never once, has this boy ever said he wishes he had not been born. His young childhood was one of frequent rushed trips to doctors and the emergency room and twice admission to the intensive care units, the one time with great fear that he would not survive the night. A childhood spent using a nebulizer 4 times daily and having to lug the nebulizer everywhere we went. He has never expressed the slightest thought about wishing he had not been born. He understands that life has pain and there is work to do to stay healthy, but he also embraces and loves life to its fullest. I talked to him last night about having a needle stuck in his artery at age 3. Yeah, it hurt, but it wasn't even anything that stood out in his memories. What did? The male nurse who attended him and joked with him and made him feel good. He went through incredible pain but that is not what made the biggest impression on him.
I have 5 children and each one provided challenges. Thyroid disease at age 10. Pneumonia at age 5. Three kids with asthma. Gallbladder problems at age 14. Life is not easy and life brings pain. All these kids have presented us with different problems but I would not say I wish they had not been born and I could never honestly say that I would not do it all again, even knowing what problems they would encounter. My kids have not had unusual problems. This is all part of being a parent. Should I blame myself for passing on genes that led to thyroid disease and asthma? I don't think so. They are not any medical condition. They are my children and they all have lives that they love. What you do is a parent is what will matter the most. If you present a depressed scared parent to a child, the child will also be scared, but if you show a positive attitude and a belief that your child can have a good life, your children will believe in themselves and believe they can climb every mountain. Can you find your inner strength and become a strong parent who can be a guide to a child whose life will present many challenges? Can you put your own fears aside and see the enjoyment your child finds in life?
Would I willingly put my child through everything again knowing all in advance? Yes. Not even the slightest hesitation.
Thalassemia is not easy for the patients or parents but for those who have it, it really does help to try and maintain a positive attitude and parents play a big role in this. I see a woman like Shikha whose daughter grew up in India where conditions were not good for thalassemics, but I have never heard a defeatist word from Shikha. She worked hard to make sure her daughter got the care she needed and now her daughter is pregnant and about to make Shikha a grandmother. I am sure she had times of doubt and fear but as a parent, she realized how self defeating this is and persevered and has been rewarded with a successful, happy daughter. So much depends on how a parent approaches the challenges of raising children and if parents are to succeed, even when a child has no health issues, they need to find the strength to deal with all the challenges that life will bring. No one ever said being a parent is easy but it can be very rewarding.
One other thing I must say. Think about what you are saying and if it is something you want your child to read when he is older and comes to this group and sees the words his parent said. Will he see words that were full of guilt and self pity or will he see words of determination to do the best no matter what? Will he find strength in the strength of his parents or will he learn weakness and regret? In spite of the certainly overwhelming feelings that can engulf the parents of a child newly diagnosed with thalassemia, it is the life of every good parent to do their best and give their child the best chance. No matter how hard it is, every parent who truly wants to do the best for his or her child, somehow finds the strength to persevere. I am confident that this will happen with our young parents here and that as time passes, the same things will happen for them as it has for the parents who have come here previously and have learned to adapt.
Thalassemia is not fair. It is a disorder that causes many problems. But it is not the end of the world unless you give up and frankly, parents are not allowed to give up. When we make that choice to become parents we accept this. The words of Miaki, who told us the story of being a teenager who complained loudly about her fate apply well here. She told us about how her mother took her to see kids who were really bad off physically. Miaki woke up that day. She learned that she really didn't have things so bad.
http://www.thalassemiapatientsandfriends.com/index.php?topic=179.msg1405#msg1405
When I was younger I use to blame my parents for bringing me into the world of thalassaemia. I thought they hated me & they wanted me to suffer. At the age of 16 when I was at my peak of rebellion against my parents & the world in that matter and I thought I knew it all, my mother took me to a school were she volunteered her time as a carer for children with special needs. Upon arriving at this school (I still thought my mother was nasty, but she was about to teach me the best lesson in life) she says to me “ I am about to take you into this school, when we leave later in the afternoon I will ask you one simple question. I will not be with you once we walk in here your on your own to do as you please”
I walked in & I was left speechless, I felt like a complete idiot that I carried on about my life. I saw children / adults in wheelchairs, in beds, some where missing limbs, others were blind, others couldn’t walk, talk, needed aid in feeding & the list goes on. And here was me who was able to play ball with my friends, go shopping, get an education, & go out with my friends to the movies, for coffee. I didn’t need help in dressing, feeding & so on.
When my day visit finished & I got into the car with my mom for the ride home, not a word was spoken. My mother says to me “is there anything wrong with you?” After a long pause & tears rolling down my face I responded with a simple “NO”
My mother that day taught me the best lesson ever, go out there do what you want to do, become who you want to become, nobody has the right to stop you or take nothing from you. You have a disorder you need to take the right motions in life to keep everything in order so you too can see the world that is at your feet.
That changed me & that is what has made me who I am today. I thanked my mother for that special lesson. I was able to move forward & forget about the kids who use to tease me at school for being short, missing out on school often because I was constantly not well & the list goes on. We have to learn to ignore them because these people are not worthy of your company, your friendship, your trust of YOU!
Miaki is now a 40 year old mom of a teenage son. Her life has been like the lives of so many people, full of good times and bad, happiness and pain, but she will never again say she wishes she had never been born. Life is the greatest of adventures and what we make of it is up to each one of us.
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Being practical and pointing out the obvious is NOT BEING NEGATIVE. Life has presented me quite a few challenges and I was able to over come some of them, and did not over come some. I dont want thalassemia to make my life even spicier. But obviously, that is just me..
And NO. My kid will not be reeling with "SELF PITY". Thank you.
There is a difference between loving a child after being born and not wanting when he is fetus at 11 weeks old. I love my child and protect and work for him with everything I have. As people are saying, no, I DONT consider my child a burden. He is the love of our lives, our joy. We are so unbelievably happy now, and some times I think if he did not have this condition, our happiness would have been not containable. We would have gone insane with happiness.
Again, I feel sorry to have pointed out the obvious. I think Charishma, did not want to know the obvious. She already knows the obvious. She wanted hope above the obvious. Then, there certainly is hope, that is what is making all continue with our lives.
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MomofShreyas,
Please know that I thank you for giving me your advice. This was how you felt and what you are going through and I appreciate you sharing it with me. I can't say i knew what I wanted from all of this but I definitely am getting a lot of information. The good, the bad and the ugly. ALL aspects are good for me to know.
I did not know WHAT we are going to face until I spoke to all of you. I did not know the obvious. This post was made so that I could have some sort of guidance and to help me figure it all out. Now i know what I know and that has helped me somewhat figure things out.
I'm sure that everyone on this site has felt what you are when you see you child suffering...after hearing your pain i know i will also go through it and have just as hard of a time. I'm having a hard time with it NOW just thinking about it. I ALWAYS said that I do not want to see my child suffer EVER and if this was to happen I would probably abort it. Now, I'm here and being here is an entirely different story. I don't know the girl who said that before she actually had a child within her.
Maybe I'll regret it later...but maybe i won't. I can't read into the future but I know how I feel now and those feelings are very strong. These feelings are STRONGER than i knew just one week ago.
Please know that I truly do appreciate your responses and your feelings in this matter. They are REAL and that is what I asked for no matter how harsh the truth is.
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Maybe I'll regret it later...but maybe i won't.
Believe me you won't,you'll learn to live with the joy your precious child will offer,just trust me on that,initial few years will be hard but then you'll come to know that thalassemia is not a death sentence.
Please keep sharing your concerns,we are all here to support you,and i am sorry if anything i said offended you,you are going through a lot already,i hope we are not making it more difficult for you. :hugfriend
Zaini.
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Hi Charisma.....
Lots has already been said,but wanted to just let you know my view as well.....
Whatever the decision, it is tough....
I was in a dilemma whether or not to opine...since you have already made up your mind....
I can imagine your roller coaster of emotions-with the joy of conceiving despite the odds and then this diagnosis...
Life isnt easy anyways...so you have to be strong no matter what. No doubt that the scene is better now and is improving each day...
Hello! In January my Chinese friend will move for atleast a year to Guangzhou. I am planning to visit her in the summer of 2010! Maybe you can give me any suggestions to which hospital I should go when things will get wrong. You see, I want to be well prepared. I hope you and your family are doing well. Best wishes Dore p.s. I have never been in China (Asia) before.
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Hello Carisma,
When I post here for the first time I felt very down and did not had the energy to read all those posts. The day after I post I read that you have endome???? I have a friend with that too and she told me always that it is almost impossible to become pregnant with it. However her situation is completely different then yours. She got ulcerative colitis as her number #1 disease and is always in so much pain. It seems that UC is genetical and that is why she decided to never have a child (of her own). I do believe that UC is much worser than a red blood disease. My friend want the docs to operate her for emd?? but they don't want to do that because of the UC. Sounds that a bit similar to you? I really wish I had a magic stick to make her better.
I can not be a real part of this discussion. But I must say that I don't see things so bright as some of us do.
To all the mothers I want to say: Don't feel quilty!!
It's strange, but I never have thought about the fact that my mother has felt quilty about it. I have feel me always quilty that I was not that healthy child.
I really hope you pregnancy will go smoothly. Weren't you 27 weeks pregnant? That's almost 4 months. 5 months to go is September......?
Best wishes, Dore
p.s. not thal, but pyruvate kinase deficiency
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Dore,
To all the mothers I want to say: Don't feel quilty!!
To all patients,please don't feel guilty,i think i am safe to say on all mom's behalf,that we are glad to have you in our lives,as our daughters or sons,we are proud of you,and we'll be there for you no matter what. :hugfriend
Zaini.
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we are glad to have you in our lives,as our daughters or sons,we are proud of you,and we'll be there for you no matter what.
Well said :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :exactly :exactly :exactly :exactly :agree :agree :agree :yay
manal
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I hope the woman who start this topic is doing well.
:flowers
Best wishes, Dore
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Hope you are well Charishma :hugfriend.
Zaini.
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Hi guys,
I am doing really well - thank you so much for asking :hugfriend. It has been a stressful few weeks as i have had 2 close family members in the hospital but both are doing well and back at home now.
Other than that, things have been really good. I have moved past being sad about our baby's condition and have accepted the fact that our little warrior is going to have to be one strong girl or boy!!! I am doing a lot of research and learning so much. There are still things that I don't understand but I think these are are things I will have to go through in order to figure it out completely.
It is amazing to me how many great people are out there willing to help in the time of need.
I spoke with Eileen from CAF recently and she mentioned there is a specialist in Atlanta that I can go to so that is wonderful! Eileen is also helping me find a pediatric doctor here. She spoke with me for a long time the other day and I was able to obtain a lot of information.
Every day I feel more and more excited about seeing my little one. Sometimes I get scared and I just hope I will be strong enough to get my baby through it...but I think that is only natural.
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I am happy that you feel much better, please keep reading cause knowledge is power and always feel free to ask about anything that you don't understand. Keep it up :hugfriend
manal
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Carisma,
I am glad that your family members are well and home from the hospital.
It was so great seeing you message. I am glad that you spoke with Eileen, she is a wonderful person. Your little one will be brave and wonderful he/she is lucky to have you for a mom :)
Much love,
Sharmin :hugfriend
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Carisma,
I am so happy for you :hugfriend yes your little warrior will be strong and you'll even draw your strength from him, :hugfriend.
Good luck with everything.
Zaini.