Discussions By Condition: Blood conditions

Help for a baby with congenital hemoytic anemia

Posted In: Blood conditions 1 Replies
  • Posted By: Stephanie`s mother
  • March 28, 2008
  • 11:03 AM

My 11 months old baby girl was born with congenital hemolytic anemia. I live in Romania and the doctors can`t find a diagnosis. All blood test are normal but the baby needs blood transfusions every two month. They said it may be Congenital Diserythropoietic Anemia type II, but the Ham test is negative.
We are going crazy because they don`t seem to do anything and the things become complicated. We are dealing now with iron overload and she already start to get Desferal (Desferoxamina), and the liver and the spleen are becoming larger.
If have any idea about where in this world we can go search for a certain diagnosis, please let me know.
Thank you.

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  • I know alittle bit about this since I had a hemolytic anemia due to a certain chemotherapy agent in 2000. The blood transfusions would not work on me either, my red cell blood counts would drop 30 minutes after being transfused. What did work for me were steroids. I am not sure even if they can prescribe that to a baby. But, when you talk to your doctor I guess, it couldn't hurt to ask? I wish you the best.
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