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Asperts Syndrome - help please URGENT

(5 Posts)

My nephew has been born today, with Asperts... please tell me some positive things, I feel so cross / sad / upset for my sister, tell me everything,. I have to go and stay with them tomorrow when they get home from hospital.

His bones in his head are fused, and his hands and feet I havent stopped crying

daisy5678 Mon 17-Aug-09 22:42:37

Don't know much about it, but am sorry for you, your sister and everyone involved and didn't want to leave this unanswered. x

monstermansmum Mon 17-Aug-09 23:01:35

Hi-I dont know much about Apert Syndrome-I do know that it is the result of a random genetic mutation, which means it cant be passed on. You or your nephew are no more likely to go on to have a child with the condition. From what Ive read, surgery is one the best options but I think its a 'long term project' and I havent read anywhere that it is life limiting.

Your sister and her husband will probably be feeling upset for a while and may even go through a grieving process-each mum is different but it is still a shock for her and her husband no matter how much you all love this little baby. Remember that he is still your beautiful new nephew, and his mum and dad will need all the support they can get. There will be lots of visits from drs and therapists from now on-the earlier the family get support and your nephew gets the help he needs the better it is really.

www.apert.org/

Congratulations xx

monstermansmum Mon 17-Aug-09 23:07:41

I forgot-as tempting as it may be-try NOT to google too much!! Some information is necessary but too much makes your brain frywink and you lose sight of what is most important-a little baby boy and a bewildered family. All thats really important immediately is that everyone gets some time to be together and to learn about each other.

monstermansmum Mon 17-Aug-09 23:08:50

LOL wink blush

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