Discussion Forums > Thalassemia Major
19 weeks pregnant and found out today that baby has beta thalassemia major
Zaini:
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.
Madhavi:
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...
maha:
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
momofShreyas:
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
MomofABabyThalMajor:
I totally understand what you are saying MomOfShreyas, it is very true and very natural feeling.
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