Discussion Forums > Thalassemia Major
19 weeks pregnant and found out today that baby has beta thalassemia major
Zaini:
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.
Manal:
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
momofShreyas:
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.
Zaini:
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.
Cari:
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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