Alpha thalassemia major - treatment options, prognosis, experiences

Hello,

Friends of mine just learned that their fetus has alpha thalassemia major. This was diagnosed in utero via the results of the 20 ultrasound. The baby has hydrops fetalis and an enlarged heart.

I have read some conflicting information - that this disease is always fatal, and that IUT treatment can save these babies.

Their doctor did not mention the possibility of intra uterine transfusions with them. Instead, the doctor indicates that the baby would likely not survive much longer.

Does anyone have any direct experience with alpha thal major, and a successful outcome?  Is there any recent research you could point me to?  Is there any point in trying to pursue treatment?

We are in Ontario, Canada. I'm not sure if the treatment wasn't mentioned by the doctor because it isn't covered by our state run medical plan. If anyone has any insight into that, I would greatly appreciate it.

Thank you in advance for taking the time to read this and respond.

In some cases, when the alpha major was discovered early in the pregnancy, the baby has been saved with in utero transfusions. This is not common and most hospitals would not be experienced or prepared for this. The experts on this are at Children's Hospital of Oakland. I would suggest that Oakland be contacted. They can tell you if there is still any hope for this pregnancy.

The Children’s Hospital of Oakland
Children's Hospital & Research Center at Oakland
Department of Hematology/Oncology
747 52nd Street
Oakland, California 95609
Phone: (510) 428-3347
Fax: (510) 428-3382