Keep the Baby with Thalassemia or Not?

Hello Everyone,

I am sure there may be some moms who are pregnant and found out their child has thalassemia. They may be wondering what to do after searching and learning about the illness. I too recently discovered that my now two month old has thalassemia. I understand the sadness, confusion, heartache and worries that you are experiencing. But I wanted to relate my situation in case it may benefit you.

When I was pregnant, I was offered the amnio test to determine fetal defects. I refused it; mainly because I don't believe in terminating my baby, not only because of my religion (Islam) but also because I feel my baby is a gift given to me from Allah (God). But I can imagine if I did take the test. What I would have been told would have surely worried me and caused be to consider if I should keep the baby (if I wasnt sure about it). You will be told that your baby isnt going to make it pass a certain age or that this illness would cause so many problems. A desperate mom may feel she couldnt go on with the pregnancy.

From my experience, and I am sure many on here will agree, I wouldnt even imagine not having my baby whether with thalassemia or not. Ofcourse, without it would have been ideal but I look at it this way. Its as if Allah showed me my child and said she will have thalassemia and then asked me whether I would want her. I would beg to have her. Just to be able to see her smile at me would be worth the world. Yes, it may be tough at times to see her go through things or for me to deal with things but that would be nothing compared to me cuddling her, seeing her look at me with her beautiful eyes or seeing her grow up through out life.

This forum has helped me realize this and showed me there is hope for my child to one day get a cure. There is no reason to despair. I could not imagine a day without my child. And I believe you will one day say the same.

I write this in hopes of helping anyone who is pregnant and lost as to what to do.

BabyI's mom

Your post made me feel really good. One of my main goals in running this group has been to help parents understand that thal major no longer has the connotation it once carried. I want parents to quickly understand this because it is most important that they know their child can be treated and have a decent life, so they can get on with what they should be doing, preparing for a new arrival and raising that child. Seeing how quickly you have accepted things and how much you are looking forward to your baby warms my  .

And a special thank you to Dr Eliot Vichinsky who taught me that the most important thing to remember about thal babies is that they are babies first and need parents of babies. Both parents need to bond with the baby at birth, and all that thal stuff can wait until necessary.

This is so very well said.

My warm blessings with your little baby. 

-P.

Thank you both for the comments.

Andy- I agree. I am not letting this thalassemia stop me from enjoying my bundle of joy. I almost did but quickly was able to recover.
I'm sure this forum helps lots of people as it does me.
I recall, while reading your post, I saw your signature and had to reread it. I was lost about it all and saw the signature. I thought why would i give thalassemia a chance??? then i realized what you meant. It put things in perspective. There was another signature I read that also stuck and it was about why Allah gives us these challenges. That one made me cry. It was true and I believe everything God gives us has a good that we may not understand now. It made me become stronger and I knew I could fight this thing without losing myself to it and enjoying my baby fully.

In much of the world, thals get very little chance at life. Thal majors in Afghanistan have a life expectancy of 5 years. As long as there is a thal on earth who is not getting the chance at life he or she deserves, I will always say give thals a chance.

Oh I think i better understand what you meant now. Yes it is unfortunate and I pray all babies/children find a cure.