Discussion Forums > Thalassemia Major
19 weeks pregnant and found out today that baby has beta thalassemia major
Laura:
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.
Sharmin:
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
Dori:
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
Narendra:
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.
Cari:
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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