Sams story

hi i posted in the NICU forum thought it might be better here.
Im looking for any one that is or knows anyone who has dealt with NAIT, or porencephaly or porencephalic cysts. My 11wk 6day 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, although he has been a little late with visually tracking objects.
know that every bub has their own way of doing things and they progress at different rates but because of the cyst if he isn't spot on with every development milestone it makes us think that he could have further troubles and every noise or flinch has us over analyzing that something is really wrong (when it probably isn't), the problem is that the stats on children being born with these cysts is unknown (Sam only had his brain scanned because of NAIT- children can be born with them everyday and never know + he developed the cyst during the pregnancy so noone knows if his brain will re wire itself to compensate for the cyst). Although Nait is more common than downs syndrome- 1/2000 to 1/5000 there seems to be no one that has dealt with it. Its a genetic disorder (although there has never been an occurrence in the family), i have a rare platelet type, where at sometime during the pregnancy blood had transfered across the placenta and my body had started to produce antibodies against bub the platelets that i produce 'eat' the platelets that bub gets from my partner, i had a very easy normal low risk pregnancy( the only side affect i had was a little reflux) it wasn't til he was born that we noticed he had a rash- similar to the meningicochal(?) rash that the alarm bells rang and he was rushed to NICU.
There is now a 100% chance of this happening to any future kids we have!
there are treatments i can have during the pregnancy to lessen the severity of NAIT and reduce the risk of inter cranial hemorrhaging, they include weekly injections of hormone/immune suppressants that last 6 hours thats another reason ive tried reaching out on the net is to see if there is anyone that has gone through with this treatment
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.