sams story

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 :dance: he has kept the platelets and producing his own:confetti:
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 :pray: 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.

Hi sams mum I have no idea about that sorry but i just wanted to say hi and good luck with your little man and I hope you find some answers here ;)
Take care
xox

Hi Sams Mum ...I don't have any idea about that either, I'm sorry. But I did want to welcome you to BellyBelly and say I hope you do find some answers real soon.

Hi sams mum
first let me say welcome to BB you've all had a hard start to your little mans life although i have no information for you i'm sure you'll find a mountian of support here from all the mummies and even some daddies hope to see you around the boards some time

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

wow i feel for you :(
Things might seem bad now but i bet they will get better.
Stay strong and keep us posted on your progress :)
HUGE :hugs:
take care
xox

Hi Claire, it sounds like your little man has had a very bumpy start to life, and yourself to motherhood if Sam is your first baby. My son Lucas, my first, had gastroschisis and I had no idea what to expect either, and looked for other parents on the net. I met and was able to email other parents, and now I can do the same for others. People have also met me through talking about gastroschisis on BB, so keep looking (and chatting!).

Sorry I have not heard of NAIT. Is his development the only symptom/sign? That would be a tough one as I think every mother worries about whether their baby is reaching milestones regardless.

There are easy and gentle ways you can encourage fine motor skills and co-ordination etc. My son was premmie, only a month, but a book by gymboree called Baby Play was really helpful. It shows you games you can play from birth to help in the development of these skills and lots of them are fun for mums and dads too! Gymboree has classes too as far as I know.

Welcome to BB and keep us updated.

his fine motor and hearing/speach skills are fine the major concern is that he isnt tracking we are going to see a ophthalmologist and neurologist in the new year to determin if he has vision impairment or any damage of the optic nerve, and to see if the cyst has grown or irritating other parts of the brain. the NAIT has cleared up we knew it would the cyst is the problem now- its a porencephalic cyst in the right frontal temporal lobe. we have to wait and see how things develop there are no certainties at the moment the docs are only giving us maybes.

hey sams mum,
i dont know anything about that but i just wanted to say i have some idea of what you must have been going through. My 1st child Chevy was born in Moree and after a grueling 22 hour labour Chevy was born at 5.13am on the 30th of May 2006 and was blue and not breathing they had to call an anethitist Dr Woollard to intubate him which ultimately saved his life. After 10-15mins he began breathing on his own which was a great relief just as i thought the worst was over he began taking fits and he was put in a humidy crib and we were both air lifted to JHH. Chevy was in NICU for 5 days, in those 5 days he endured blood tests every 2hours, feeding was by tube, brain monitor attached night and day, and last but not least a lumbar puncture it was so hard to watch my little baby going through this and there was nothing i could do its a feeling of helplessness that you cant stand.the whole time he was in NICU he was on an anti-convulsant that was very strong and made him very drowsy. Chevy was also given a MRI and he was given the all clear, on day 5 he was allowed back to my room and off all medication they still dont know what caused it but he is now 21 months and is happy healthy and normal. i just wanted to tell you there are people who now how you are feeling and just hang in there things will look brighter with everyday