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