Not to think about baby

Dear Andy,

Don't take it as a query I want to share with you.

All of parents like us who are carrier and whose first baby born with thalassemia, should they not to think about any baby or not to think for 2nd baby?What's your opinion?I have seen two couple they have no baby bcoz both of they are carrier.So they are not agree to take the risk.

When my doctor discover by electrophoresis report that I have e beta thalassemia minor,then she was advised not to think for 2nd baby though that time we don't know about my babies HB.She also advice if we think then go to India for fetal hb test and if the result found positive then must be take abortion of the fetal...

Andy, what do you think is the advice perfect ?

Hi Lokkhi maa
you have two options.. either conceive naturally and at certain time in the beginning of the pregnancy you do the amniocentesis test or CVS test (more accurate) and i if the baby is positive for Thal then you go for abortion
The other option is to do IVF and PGD in order to avoid being pregnant with a child with thalassemia and choosing the second option may help you to a H LA match for your first child as well

Please feel free to discuss any thing else
manal

Hello Manal,

Thank you for suggestion.

"The other option is to do IVF and PGD in order to avoid being pregnant with a child with thalassemia and choosing the second option may help you to a H LA match for your first child as well"

Please clear to me the above option.

I will never support for abortion..With or without thai all are my baby is not it?Suppose I abortion my thai positive 2nd baby then if the baby ask me in my dream "mum what is my offence ? You accept my elder sister but why not me?" Then I have no answer...If all mum abortion their thai baby then how we will get a lot of friends of this forum?All of we are a family dear...Doing abortion is better I think not to get pregnancy.

We people have a wrong idea that after 3 months abortion of a fetal is not a matter bcoz its just only a fetal not a human that time.But may be you also know I have read somewhere that after 3 months a fetal brain grow up or develop upto 70%. Could you imagine?

Best Regards..

Dear Lokkhi ma,

The options and decisions for thal parents are not easy.   Each parent has to decide what is appropriate as per their beliefs and their conscience.   It is very sad that we are in such a position that we need to make such decisions. 

It is important for us to list people's choices when they ask, but the parents themselves must decide what is right for them.  Some parents cannot imagine aborting a child while some feel it is wrong to bring another child into the world with a chronic and unpredictable illness. 

IVF and PGD allows doctors to fertilize several eggs outside the mother's  body, test the embryos and then implant embryos into the mother's uterus that do not have the disease.   

Each pregnancy is different and carries the same risk of thal.   My first child is a thal major and my second does not carry thal at all.   One of our members has one thal child, she found out her second pregnancy was also a thal - she decided to have a second thal child and now she is expecting her third child who does not have thal.   

Thal is a manageable disease, it requires vigilance and maintenance however it can be maintained.  Each of us has to decide what we are willing and able to take on.

We are all here to support anyone with whatever decision they make   

Sharmin

The only thing I want to add is that adoption is also a possibility. I do not believe in taking chances on pregnancy unless you are willing to accept a thal major child into your life. If you can take care of the child and provide proper treatment, the chance can be taken, but please keep in mind that the unborn child has not had any say in it, and some would prefer to not be born than to have to bear thalassemia. With coming advances in treatment, the burden on the child is growing less. so that is a factor as well.

It can never be an easy decision for the parents and parents need to think through all of the possibilities before making decisions.

I can not agree more Sharmin and Andy


As sharmin explained above, IVF stands for In vitro fertilization  which  means that the female ovum gets fertilized in a tube by the sperms of the husband and before putting g the embryos back in the womb of the mom, the doctors take one cell from the embryos and study this cell (this is the PGD) and exclude the ones with Thal and at this point they can check the HLA match  too in addition to Thal.  The embryos without Thal and with the matched H LA match are implanted in the womb. Finally  becoming pregnant or not is 30%  for every embryo.

This way avoids the conflict of abortion  but definetly cost a lot of money

Hope I was able to explain ;))
Manal

And for anyone choosing IVF, be patient. It seldom works the first time.

Hello Sharmin,

Thanks a lot for explanation.Once I was a dream that I have to 2/3 child.When I will back to home then all of my babies are come to me and I will hold them in my arms and hug them.But now situation is completely different...

Sorry to say my baby also suffered by seizure when she was 2/3 months.So still she is not talk like others...Just only sometimes say mum mum....But you know sharmin she is so much beautiful,when I look at her then I can't believe that she is my baby....I feel so happy but can't accept it why she have such type of disorder...

But she is now my world,my pain,my smile ,my life...As a mother you will understand it dear...

Thanks Andy and Manal also...Please keep me always in your support....

Dear Sharmin,

Your second baby does not carry thal its really really great Congrats dear......

Thank you Lokkhi maa,

My oldest is 16 years old and my daughter is now almost 13. 

All we can do is continue to take care of them and provide them with the best possible care - and lots of prayers. 
Yes, our children are the source of most of our emotions.  When I came to this website my son was my greatest concern, and while I continue to look for solutions for him I have met so many wonderful people here and these other children and adult patients are now also close to my heart.  These people are from so many different places in the world - yet I have gotten to know them so well. 

Your daughter seems quite young still, I'm sure that she will thrive and do many wonderful things.  Most thal children impress us with will power and motivation beyond our expectations.   You have time to think about your dream to have more children - although I understand that this decisions is not quite so easy for parents of thal children.


Best,

Sharni

Thank you Sharmin for your support.

I have seen of your earlier many discussions and advices and realize you are so caring to your baby and a great mother.I also want to be as you.But for job I have to stay 12 hrs outside my home and missed a lot of my baby.Just waiting when she will speak with me.A lots of your advice really helpful for all of us.I also maintain a folder where I save all of necessary advices of this forum. Last time I have saved your advice about how to take Exjade with orange juice.This advice of yours will be helpful for my baby and also helped many others.

All of yours excellent discussions make so easy to maintain thal properly.Thanks to all of you and Andy...

Pray and best withes to your child's and family...