Thalassemia Patients and Friends
Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: Binita on September 09, 2011, 07:31:46 PM
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Hi everyone,
I am a mother of 2.3 yrs boy baby who is a Thal major. We are planning for a second child only to cure him and so would like to do the HLA testing when I am 12 weeks pregnant. I am from India, Bangalore. Please advise me where can i get the testing done and if there is any other way of curing my child. Please help.
Thank you,
Binita
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Binita
I am also from India (west bengal ). you can try Narayan-hridhaulah hospital in Hydarabad. It is one of the best and cost effective.
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Hi ,
I am also from Bangalore. You can talk to Dr Ashis Dixit,Manipal Hospital.He can guide you.
All the best.
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Hi Aatin n Poar thanks for the info. I visit Narayan Hrudalaya in Bangalore n consult Dr. Sarad Damodar . LL definatly find out if the test is done in Hyd. N Poar I was consulting ashish Dixit earlier but then someone told me to meet Sharad Damodar .
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vinita
plz keep me updating time to time . I am also planning to visit narayan - hridayatulah. Also you can visit kolkata tata hospital to visit Dr mammen chandy, the senior most hematologist of india.
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Hi Aatin,
I met Dr. Sharat Damodar this sunday n to my surprise he told a big No for cord blood transplant....actually as per my information he tried 3 to 4 of this transplant n it all didnt work but these were done on elderly patients so might be didnt work. The patient should be younger or elderly person should have 2 to 3 cords which is difficult to get. Can u please let me know what does Dr. Mammem chandy say.
Thank You
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Hi Bini
Dr. Chandy told me to wait for till the baby two yr old. At the same time he is going to perform his first BMT here in kolkata at tata memorial . The BM is coming from Germany .
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Hi aatin,
I am little confused the BMT is using Bone marrow or cord blood....
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Technically a BMT is a bone marrow transplant, with stem cells harvested from the marrow. A stem cell transplant uses stem cells harvested from the blood, instead of the bone marrow. A cord blood transplant uses stem cells from the cord blood of the donor. In all cases, stem cells are used but where they come from differs.
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reviving this thread.
my kid is 9 months and i have similar question.
Binita can you tell me what did you find out?
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Someone correct me if I am wrong, but you would have a 1 in 4 chance of having another child with beta thal major with every pregnancy...
Nicole
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For questions about BMT I highly recommend submitting your questions to Dr Sodani at http://www.curethalassemia.org/free-advice-on-bmt/
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i did Andy.
Practicalities is what doctors might not be able to appreciate as parents/patients themselves.
I asked on their portal too and asking here too, what window of age we should target to get best results for BMT/cordblood
I know earliest the better, but if we plan by the time she is 3 or 4 will that be late( she turned 9 months today )?
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Hi pmeet,
we can get the HLA testing done when we are in the 12th week. We can go to Narayan Hrudalaya or manipal for the testing. Once it is confirmed whether the child is minor or major u will be advised by the doctor accordingly to carry on or abort the child. BUT thats not IT. The big question then comes up why do you want a second child....is it so that you can even cure the first child .....I know I am very rude here but if our answer is a Yes we can even get a HLA typing done in a Hospital in Delhi for the unborn baby. N if it matches our good luck n if it doesnt then is where we will have to take a decision which is not going to be easy....................Doctors are strictly against this as its like aborting a girl child case ...................
That is all i know till now......if anyone can give me some suggestion or let me know if I am wrong I will be more than happy.
Thank you.
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PGD is not possible in İndia? İt is all about ethetic. Also has a match be found through eotld donor banks?
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Pmeet, because transfusions introduce new antigens into the body, it is recommended to do BMT as early as possible to minimize the amount of foreign antigens present, which create antibody reactions to the transfused blood. Of course, if a match is not yet found, patience is required and proper treatment, including chelation is necessary to maintain the health of the patient prior to the BMT.
And a comment on abortion and thalassemia. I have no interest in reviving the moral discussions involved. My own opinion is that this is a decision that should always be left to the parents and we should never make any judgments on the choices of others. This opinion was shared by Lisa Cammilleri, and the respect for parents and their privacy will always be held with utmost regard at thalpal. With that said, I am not completely informed about official views towards abortion in India, but I do know it is legal there and I also know that many parents in India and other nearby nations often choose abortion once they learn the fetus is a thal major. Many of these parents already have at least one thal major child and feel that they cannot handle the burden and do not want to inflict thalassemia on their children. I realize that for many, there is a great moral and ethical problem, but I do hope we can all realize that we can never walk in the shoes of the parents making these decisions and should never assume that we can ever be in position to judge. Being a thal major isn't easy even when the best treatment is available and for much of the world, proper treatment is only something that can be read about. If parents trying for an HLA match discover the fetus to be thal major and choose to abort, I feel the only message that should be given is we're sorry and please persevere.
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I think it's also important to realize that our posts on this site are public. (Meaning, while I must log in to post a message, I can view the existing messages without logging in - as a guest.) Most of us share things that are specific enough that others could figure out who we are. I assume most of our children will one day be members of this group. Things posted here could potentially be read by our children one day.
From a parenting perspective, it is likely a very difficult situation to find oneself in to one day have to explain to one's child who has beta thal major that a choice to abort a 2nd beta thal major fetus was made...I am thinking of the implied messages that could send to one's existing child that could be quite difficult for a child to comprehend and deal with self-esteem wise (ie. burden, what might my parents have done if they had known I would be born with beta thal major, etc.).
I come from a very different experience - having chosen to adopt a son with beta thal major, and now choosing to adopt a 2nd child with this same condition, in addition to having a child who does not have thalassemia. I am not trying to pass judgement on anyone. I just wanted to mention that these messages are accessible by the public (meaning they don't need to register and log in to see them) and our own children one day will likely join this group for support and would be able to see our past messages....
Nicole
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Binita...
Im planning of having my 3rd this year and you know what- I do it because i want to find a match to my thal major, Joey and Jovy ( sound rude?). They are both thalasemia Major. I don't care what will people says about it as I don't expect people to understand how's life with them.
Only us know what does it feel of having such a special kids as they are.
Stand still and be brave!