hi im brand new to the BB forums and im looking for any one that is or knows anyone who has dealt with NAIT, or porencephaly or porencephalic cysts. My 11wk 2day old DS Sam was born with a rare Alloe Immune ( opposite of auto immune) disorder called NAIT (Neo Natal Alloe Immune Thrombocytopenia) which affected his ability to produce platelets( the clotting factor in the blood) which caused a bleed in the brain that produced a porencephalic cyst. However the doctors didnt know what it was for 2 days and we were given vague ideas of what it wasnt, thoses few days were the hardest thing we've ever experienced. Anyway after the diagnosis Sam had to go through at least 5 platelet transfusions with daily blood tests, we were in NICU for a total of 7 days, when the doctors thought he was able to keep his platelet count up for a few days we were sent home. When the count dropped it was back to the NICU unit @ the JHH for more transfusions and blood tests this happened about twice a week until he was 7 weeks then weekly til about 9 weeks when he had his last transfusion he has kept the platelets and producing his own
Now we have to monitor his progress and growth because of the cyst that is located in the frontal temporal lobe, it may cause development, emotional or learning difficulties or at the least mild seizures, or he could be fine and we could never know that its there he has follow up appointments with a neurologist and physio therapist and speech pathologist and optometrist. So far so good though.

Well the purpose of this post is to see if there is any one that has experienced anything like this because there is a total lack of info and support on these topics/conditions that i can talk to or share experiences with, i would greatly appreciate hearing from anyone TIA - claire.