Discussion Forums > Thalassemia Major
My 2 month old daughter may have to get a transfusion soon .....
Bostonian_04:
Thanks all,
I cannot express in words how much relieved I feel in your company. Both my wife and I read through the forums and draw strength from the various experiences and postive attitude that this whole community has.
I will keep you all posted on my baby's progress. We will have to go in for the transfusion tomorrow since it seems that the Hb is falling too rapidly than what the hematologist had initially expected. We will see what happens tomorrow. Since our daughter is so young, they will have to admit her to transfuse (it cannot be done in the normal infusion room). The clinic has indicated that they will call us up when they have a bed ready/available for our daughter.
Regards,
Bostonian
Shikha Mitra:
HI Bostonian
It looks that you daughter will have to start transfusions and Danielle is rght.
If you keep her on a low Hb-- 6-7-8 for a longer time, the marrow will be overworking to produce blood, all her organs will be overworking and hankering for blood, as a result, she will be really unwell.. her growth will be hampered.
In thal, the real thing is to totally supress the production of any faulty RBCs and let them grow on donated healthy blood.
if you keep the Hb high right from the start, she will not have any bossing of the bones on the forehead, she will gain height and weight normally.. I dont know if you have come across any under treated thals in india or elsewhere, then you will know what i mean. So , I know it is hard, please keep the Hb to as normal as possible.. an hb level which any normal baby would have.
These children can have transfusions every 10-15 days.. so dont get worried if that comes by.. because this is the only way out.
The pre-transfusion Hb level is the deciding factor when to transfuse your child.. and in months to come you will automatically know when the Hb is down and she will settle down to a particular frequency.
In India the doctors TELL you what to do.. but in the USA they SUGGEST what you have to do.. because that is the way it it there.
Do try and find a clinical hematalogist at the Boston Childrens Hospital.. or try and consult Dr. Allan Cohen once.
And in case you are in India on a holiday.. well a visit to Dr. M.B. Agarwal is a MUST. Dr. Agarwal was my saviour.. without him, my daughter would not be where she is today. He is my God! :smile2
And in case you are in the UK, do see Dr. Wonke or Dr. Shah.. ( or keep in touch with them with emails) ...they are more than capable of handling thals.. take their opinions.. your daughter is so young.. give her the opportunities that you can afford to give..
Please do let us know how the transfusion went...
Love
shikha
SalD:
Hello Bostonian,
Good luck with the first transfusion :hug
The haematologist can guide you with the treatment and provide you with information, but as you are the guardian for your baby you have the final say. For example, if you were a thal major and your religion forbade blood transfusions (Jehovah's witness i think) but the haematologist thought it was the right treatment for you, the haematologist could not say "You must have a blood transfusion". They can recommend one to you, but you have the final decision about what treatment you do or don't have. That is the way I understand it! You can then gather all the information you can from your treating doctor, your support group here, and anywhere else you like to inform your decision about treatment.
Cheerio!
SalD.
Bostonian_04:
Thanks all,
She is going in at 10:45AM (EDT - local time in Boston) fr the transfusion. The RN in charge of transfusion has indicated that it might take most part of the day, they have to fisrt draw her blood and do some cross-typing for a match before they can start the transfusion. Also, since she is an infant and they will have to drip in the blood so as not to overload the heart. I will let you guys know how it went.
Shikha, SalD, you guys are right, I had misunderstood the hematologist. She wanted us to have the transfusion, but was trying to see if we were OK with it. I think I was a bit emotional at that time and had over-reacted.
Thanks a bunch,
Bostonian
Andy Battaglia:
Best of luck to you and your wife and especially your daughter, today Bostonian. Starting transfusions early is the best strategy and will result in normal development. It's not an easy thing at the start but it eventually becomes routine.
Early diagnosis comes as a shock to the parents but it also means early treatment, which is a very positive thing for the child. As Shikha mentioned, if you see children who were not treated early in life, you immediately see the differences in the shape of the head and the mouth. Early treatment is a blessing and even though it will be hard, maybe even harder on the parents to watch, it is the best thing that can happen.
In the US you will be asked before any treatment or procedure is undertaken. It is always up to the patient or guardian to agree to, so always expect to be asked instead of told what will happen. Patients have a legal bill of rights in the US and you will often see these posted in hospitals. You have the right to know why anything will be done and an explanation why. You will find that every good doctor will happily explain anything and also appreciate your own efforts to learn and understand what is taking place and why. The patient or the guardian will always be the one making the final decisions.
We'll be there with you in spirit today so please take our hands and squeeze hard when you need to.
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