Discussion Forums > Thalassemia Major

19 weeks pregnant and found out today that baby has beta thalassemia major

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Cari:
I just came back from a consult with a hematologist at Winnie Palmer.  The facility has only 2 other Thal Major patients but they were very kind to me and they seem to know what they are doing.  They are also going to put me in touch with one of the other patients mothers. One of the doctors of the facility said he trained at the Philadelphia center Andy was talking about. 

We are still in shock about all of this but we decided before going that regardless of what happens we are definitely keeping our baby and will face the challenges to come.   

All of you have really put things in perspective for us.  This site and your individual messages have really overwhelmed my husband and I and we are truly blessed to have so much support from people who do not even know who we are.  If it wasn't for all of your positivity, I would go crazy.  Honestly, just your quick responses to my messages have kept my spirits up.  I am really thankful for all of you and i look forward to getting to know each of you more.   

Please continue to give us any advice or information you have that you think will be beneficial for us to know.  Please continue to guide me through this so that I can stay positive and give my child everything that it needs.         

Charishma
 

Sharmin:
Dear Charishma,

I wish you and your baby all the best.  God bless you and your family with happiness and good health.  With proper treatment, your baby will be very healthy and successful in life.  Treatment for thalassemia is getting better each day, and most of the complications that you will hear about occurred a long time ago when treatment was not as advanced - or due to negligence.  Most problems can be prevented, and things should go smoothly for you and your baby.  We will be here to guide you and help you in any way that we can.  Please feel free to contact any of us when ever you need advice or support. 

Please be sure to take good care of yourself now, for the baby and for yourself.  Eat well, rest and relax as much as you can so that when the baby is born he/she will be healthy and strong.  Also, when the baby is born you will need to be healthy and strong so that you can take care of your baby.  Remember, the more relaxed and matter of fact you are about the thalassemia, the better your child will deal with it. 

Best of luck and god bless,

Sharmin

maha:
Dear Charishma,
I am sure you will never regret your decision. My son, Hassan was diagnosed as a thal major at the age of one. Today he is almost three, no different from any non thal child of his age. Transfusion days are still a little difficult on us as his veins are so difficult to find and Hassan could win a WWE title on those days. Infact the last time I was in the hosp the nurse in charge requested me to remove his shoes. She said he had kicked her on her face once and she didn`t know where he would target that day. So many children are born each year with special needs, autism, cerebral palsy, downs syndrome etc.. etc.. I am glad my child has only thalassemia which can be easily managed with a few pricks. This is your first pregnancy, enjoy it to the fullest. We are here to support you and your right decision.
take care
maha

MomofABabyThalMajor:
Dear Charishma,
I was in a similar situation like yours about six months back, when I reliazed after my son's birth about his condition, I did not do the amnio test like you did. It is very hard to believe the truth, even today I cannot believe sometimes, but once I read the topics here in the site (which I do everyday) and got to know people like Andy, Sharmin, Zaini ,Narendra etc, I felt much better, they have been great source of strength to me, personally, reading thier topics gives me the energy and strength to fight.....today my son is a beautiful toddler, almost 7 months old, looks and behaves as a seven month toddler, very naughty and keeps us busy....we all adore him.
Though I am scared at times but I always believe and pray that he will be fine with the new treatments and lead a normal life like other children.
It is very hard to believe, at the begining but slowly you will be normal and come to terms with it. The question I used to ask and still do it, "why me and my baby, God?" But my mom keeps telling me you are not the only one, which is so true, so we need to support each other (as everybody does here in this site....wonderful people here),,,I wish you all the best. Please take care of your health and the baby...Get good rest and eat well... let us know if I can help you in any way. We are lucky to be here in US, as the doctors are so good and caring. I wish you a healthy pregnancy and a beautiful baby.

Manal:
Dear MomofABabyThalMajor


--- Quote ---why me and my baby, God?"
--- End quote ---

I had the same question three years ago when my son was diagnoised and used to ask it every moment of my life until one day one of the memebers here just answered it and told me '' And Why Not You'' .....

To tell you the truth, i had no answer but from that day, i really stopped asking this question because by time i got to know that God does not give us except what we can endure and deal with, it could be hard at the beginning but at the end we will do it. This does not mean that we don't get our weak moments --even after many years of diagnosis-- but you will soon overcome them with hope and the unconditional support you will find here. Have faith that a cure will be there one day and even if it is not there, we have all means today to offer our children a wonderful and normal life. These are gifted children, all they need is more extra care and by time things will be as normal as anything in our lives.

Please do share your thoughts and concerns, wishing you and your baby all the best

manal

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