Pregnant carrier expecting result of baby

Hi all,
I'm married with my husband who is also a Beta Thalassemia carrier.
We only found out about the news when i was around 10 weeks pregnant. It came as a blow and I haven't stopped searching around for info on Thalassemia since.
I went for a CVS test few days back and the result of my baby (if he/she has minor/major) will be out any minute.
I am very very nervous.
If the result turns out my baby has major, I will be making the most difficult decision of my life.
I've watched the baby on ultrasound so many times before and he/she has been very actively moving inside my womb and I am already getting so used to talking to him/her every night before going to bed.
Part of me wanting to keep the baby so much but knowing we will be facing a lot of challenge in life with major is making me rethink my decision.
I am sorry if what I have said here is rude, I believe wholly that a major can have a fulfilling life as many portrait here.
But at the same time I really want my baby to have a carefree life as most other children do.

I understand the reason for having a CVS test is to identify a major baby early and have a termination as soon as possible.
But a termination will be the very last thing I will ever do....
I wonder if someone can tell me what will be best for my baby....

Many thanks,

Hi,

Welcome on the forum,to tell you the truth,you are the only one who can make the decision,the treatment of thalassemia has advanced so much now a days,that most of us don't even have to think about it until the transfusion day comes,yes challenges can arise,but when is the life challenge free?

One of our new members also faced the the same situation,you can read about it here

http://www.thalassemiapatientsandfriends.com/index.php?topic=2773.0;topicseen

I hope your child is thal free,please update us with the results and welcome once again .

Zaini.

Let's do what your name says and hope for the best. If the time comes that you do have to make a decision, we will support whatever choice you make.

Dear Hopeforthebest,

As Andy has said, let us hope for the best - that your baby does not have thal major.  It is important however to have an idea of what decisions you will make in light of the information that you are about to receive.  Often, we are hoping for the best and left forlorn if the news we receive is not what we had hoped for.

My advise to you would depend on a few things.  How difficult this pregnancy was for you to achieve, where you live, and how far along you are in your pregnancy.   

I ask this because if pregnancy is difficult for you to achieve then it is important to know that in my opinion, having a child with thalassemia major is far better than not having a child.  Thalassemia, if properly treated, especially with modern treatment can offer you and your child a very good quality of life.  Again, if you are able to get pregnant easily you must consider that there are many challenges in having a child with thalassemia and it is a great responsibility to undertake.  Personally, I think that this challenge has been more than worthwhile, but it takes a lot of courage and a lot of heart.  It also takes a lot of time to accept this disease as a part of your life.

I ask where you live because it will be easier to manage the disease (although you can manage it anywhere - if you have the will power - as Zaini has established) but if you live in North America or the UK perhaps you will have certain advantages accessible to you in raising a very healthy child. 

I ask how far along your pregnancy is because without knowing it, we become more and more emotionally invested in our child as pregnancy progresses.  It is one thing to think that you will be able to terminate a pregnancy if the child is affected and it is another thing to actually do so.  Mother's can underestimate the emotional trauma that is involved - and should be prepared for months of mourning and loss associated with such a decision.  Especially knowing that for the most part your child would have looked and behaved very normal.  For this reason, it is important to know what you are prepared to deal with - life long management of this disease (which is not impossible) or terminating a pregnancy - which is equally heartbreaking.   For this reason, you should ensure that you have counseling available to you regardless of which decision you make. 

Please know that we are all praying that you will not be faced with this decision at all, because there isn't an easy answer available.  And we will support you - without judgement because the decisions we thal carriers have to make that most others will never face - and most others may never understand.  We know that whatever you decide will be out of love for your child and what YOU believe is best for your child.  We are all here to help you when you make your decision.  As a group we believe in pro choice - and we will be here for you.  I hope that this is not too much information for you - prematurely - as you do not have he results yet - but once one receives results it becomes a roller coaster ride and I hope to equip you with this knowledge before you receive your results. 

Again, I pray that the results will tell you that your baby does not have thal major 

Best wishes,

Sharmin

Hi Zaini, Andy and Sharmin,

Thank you all for your guidance and support.
I have actually been reading a lot of the posts here and have been touched so many times.
Sharmin, before I answer your questions, I want to say you have a great child and his post here has really brought me to tears. Believe it or not, if I were to keep my baby, I want to raise him/her to be as strong as your little boy. He is awesome.
But first of all I need to make sure I have to be as strong as you, something which I am not entirely sure I can be.

I currently live in the UK, which I believe there is adequate support of thal, but because of a long waiting list on the national health service, things can be extremely slow to progress. private health care is rare, and very expensive.
both me an my husband are from malaysia, a country where thals are very common but standard of health care is obviously not as advanced as developed countries. but from what i understood from a malaysian friend who has thal major, frequent transfusion is not a problem for her and she can live a relatively normal life, although her sister who has a more severe form of major is less active and seldom leave the house.
We are intending to return to Malaysia in a few years time, so I guess understanding both systems in the UK and Malaysia is very important. I would say both countries have adequate facilities for thal major to sustain a normal life.

I am now 12 weeks pregnant. This pregnancy came only after 1 year of conscious trying. I wouldn't say it was extremely difficult, but from what I understand, thal minors generally are not as fertile as normal ppl (please correct me if I'm wrong), so I wonder if it's going to take me even longer to conceive again if I give up this baby. The dilemma I am going through is awful - I want to be attached to my baby as much as possible, but I am trying to refrain myself from doing so because I might need not able to keep him any longer.

I once said to my husband I wanted 3-4 children, but after finding out abt we both are minors made me rethink again.
I cannot imagine going through this process again and again. One minute I am excited, and the next I will have to bear the eventful cvs test (which I had), waiting forever for the results (longest 1 week in my entire life), and making a painful decision if things don't come out right or be prepared to face life-long challenges ahead.

I sometimes look to my peers in jeolousy - people who can truly enjoy their pregnancies, not having to be undergoing so much worries and traumatic experiences during a period which is supposed to be the best 9 months of their lives. I have heard of PGD IVF option, which is possibly the best thing we can choose to go for the next pregnancy. But with the high cost and low success rate, I can only watch my friends who had 3 kids in a breeze enviously. I know I shouldn't compare, but really, why me??

The results of the baby is still not out, apparently the growing of cells takes a while and passing my days has not been easy.

I truly adore everyone here who has been so strong emotionally having to go through so much, either with themselves or their children. To be honest, I probably have not fully accepted the fact that both of us are thal minors and the consequences this would bring.

Thank you again for all your kind wishes and support, this site is the only place i can come to at the moment and it is invaluable. god bless you all.

xx

Hi  hopeforthebest


I know what you are going through right now, but again as everyone said before, we all support you in whatever decesion you take

but from what I understand, thal minors generally are not as fertile as normal ppl

I don't know from where you know this infomation but this is actually not true

wish you the best and keep updating

manal

Dear hopeforthebest,

How are you doing?  I can imagine that all of the information here is quite overwhelming.  Please know that much of it does not apply to a child born today.  Patients today do not have to face most of the obstacles and challenges that thalassemia patients faced in the past. 

Do know that once you receive your results - and I hope very much that they will tell you that your baby does not have thal - but if the baby is a thal, you do have a choice.  It is not an easy one, but I hope that whatever you decide that you will come to peace with it.  My biggest challenge with thalassemia has been the worry - which was instilled early on when lil A was diagnosed.  The second greatest problem has been the antibodies that he formed because proper testing was not done before he was initially transfused.  Otherwise, this disease has not been a big problem for us.  I am hopeful that a cure will be available in the near future and many strides have been made towards a cure. 

Thank you very kindly for your compliments - lil A and all of the other young thals that I have met and heard from are all amazing personalities and very courageous.  They are usually quite gifted and energetic children - we have so many wonderful and inspiring adult thals to learn from. 

Best wishes to you and your baby - again I hope that the results alleviate all of your concerns.  Please keep us posted.

Sharmin

Hi all,

The results are out and I'm very grateful to tell you that my baby is shown to be either normal/thal carrier.
We are absolutely thrilled and I am now confidently carrying on with my pregnancy with peace of mind.
Thank you very much for all your support and information.
My husband and I are determined to try for more children later on and we will keep reading to ensure the best for our future children.

God bless you all
H

Congratulations!!!

I wish you all the best, and please don't stop posting!
 

PS what date do you expect the baby?

Best wishes, Dore
My apologies for my English; it's bad today.

Congratulations hopeforthebest!
I am so glad that your anxieties have been put to rest.  I wish a you healthy pregnancy and arrival for your baby!
It's been a pleasure 

Sharmin

Very good to hear this news. Make sure the child knows the carrier status if it turns out that way. It's important for future decisions.

                                 

Enjoy your pregnancy

Zaini.

Congratulations dear, i am so happy for you

manal

 

Congratulation for the baby of yours.,Take care your baby and love your baby.,