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My 2 month old daughter may have to get a transfusion soon .....

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Bostonian_04:
Today my 2 month old daughter's condition suddenly deteriorated. She seemed OK last night when she went to sleep (she seemed a bit fussy, but I thought that she was just being a baby). But this morning, she was having trouble waking up and when she did finally wake up (much later than when she usually wakes up), she did not feel like feeding. Once she started, she fell asleep once more during the feed. She also started getting fussy even in the morning (a first for her).

We called up the hematologist and got a full CBC done. We found that her Hb has fallen to 7.9 from 8.9 just 5 days back. Her hematocrit is still at around 22 (down from 25.6 five days back). Is this kind of a drop normal for b-thal major babies? The hematologist has said that he will check her numbers again next Tuesday (Sep 26) and if deemed necessary transfuse her.

I am really scared. I thought that everything will be fine at least for the first 6 months when she has the HbF, but it does not seem to be the case. Is it normal for a baby so young to get a transfusion? If she gets a transfusion next week, how should my wife and I prepare ourselves? I will really appreciate if someone has some advise to share with us ....

Thanks,

Bostonian

Andy Battaglia:
Hi,

I have heard of cases where transfusion starts as early as 7 weeks. The doctors may decide to start soon with your daughter if she is showing failure to thrive, amd almost certainly once the Hb drops below 7. One thing that has to be watched for is any sign of infection, fever, etc., as thals that age are very susceptible to infection and antibiotics have to be administered. Breastfeeding does help the child acquire immunities and will offer some protection.

As a parent who twice had to watch his 3 year old son have blood taken from an artery for a carbon dioxide test, a test that is extremely painful and makes grown men scream, I can sympathize with what you will have to do. Sometimes you are screaming inside along with your child but you do your best to not show it.  My advice is to dig deep and find that strength that is there and that you will need to cope with the reality of raising a thal child. Be aware of how much care has changed in recent years and that with the advent of Exjade, your child may never have to know the pain of nightly desferal injections. Have faith that you will be good parents and hope that the future will be brighter. I feel that I have seen through your posts that you have the strength of character and determination to do everything you can for your daughter. I think she is in good hands in the hands of her parents.

Bostonian_04:
Hi Andy,

I really appreciate the kind words of support and advice. I draw my strength from this community. I will keep the forum posted about how my daughter does next week.

Regards,

Bostonian

Shikha Mitra:
Hi Bostonian

You dont know how truly sorry I am hearing about your daughter's condition and about your apprehensions and fears.
Well, it reminds me of the days 30 years back.
But now after 30 years, all I can tell you is,  that you are in the best of places, with the best of the doctors  and in a hospital where you will get all the modern facilities.That itself will give you some strength. They are used to handling small babies in terms of finding the vein with one prick etc.

There is nothing that you can do when your baby will be hurting from those needle pricks.. but you have to give strength to your wife, because as a mother she will be hurting even more.  Just bear the first prick.. I can assure you, your baby will sleep right through the transfusion and she will not even feel anything!.. so cheer up! :smile2

Just ACCEPT the fact fact, this has to be done.. and remember that, at least your baby  has some ways of treatment and if she is looked after well, the future is bright. Think of all the other misfortunate ones, who dont even have this much, and when you think like this, you and your wife will find  all the strength.
The first few months will be hard.. but yes, you will get used to it.. Your baby is God's chosen one and He has chosen you and your wife to look after His chosen one, because He knows that you can do it.

Please dont despair and always think positive.  Both of are young parents and there is a whole future waiting for you and your child and each day the possibilities of a cure is becoming stronger and stronger.
Now you can have a BMT, stem cell transplant, Exjade, etc etc.. so who knows, in another couple of years, your daughter can be completely free of Thal... so in the meantime, it is your duty to keep her as healthy as possible, so that she can avail of any curative treatment that might come her way in a few years time..and I know something more concrete will come up.

Hope that makes you feel better...  :smile2

Love
shikha

jzd24:
Bostonian,
     I am also very sorry that your daughter has thal, and that you have to deal with all the accompanying issues. Andy and Shikha have done a great job communicating encouragement and hope.   
     Remember that babies cannot talk, and that crying and screaming is their way of responding and communicating to things in their world. It sounds worse than it is; they are just expressing themselves, then when it is over, they move on. The actual needle going in is usually not that painful. She will be reacting more to the idea of holding her still, and being in different surroundings, etc.  I know it is unbelieveably heartbreaking to hear your baby cry, but she will adapt.  Babies are resilient, and she will feel much better after she gets transfused.
     Tap into your inner strength and be strong for your daughter. Good luck, and we will all be thinking of you at this difficult time.   Jean   :hug

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