thanks every1 its been a tough few weeks but were getting there. The biggest concern that we've had over Sams development progress is that he hasn't been visually tracking that much- i 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). 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 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 thanks again claire