My son is 9 months old and we have just had a diagnosis for a duplication on his 9q chromosome, I have no idea what this means but this is what we were told it is 'arr[GRCH37]9q34.2q34.3(137196129_141213431)' I'm sure you can see why I find it so confusing!! I am honestly finding this impossible to cope with, like because I haven't heard of anyone else with this I have no clue about my sons prospects, I don't even know if he'll live!! He can roll but but that is literally all he can do, he would happily lie on his baby gym all day and play on there, and when I try to sit him up he goes ridgid and pushes back, he doesn't pull up and he doesn't show any sign of pushing up to crawl. The dr we saw said she'd see us in a few months once she'd had a chance to look at what genes have been affected and therefore will hopefully be able to give us more of a long term plan but I'm petrified. Now when I look at him I see a disabled baby, I hate myself for it but I just feel fear towards him at the moment. I don't think anyone expects to care for a severely disabled person for their whole life but I genuinely don't think I'm strong enough. He has already had two heart surgeries to help with his aortic stenosis and that broke me each time, I don't think I can cope seeing him get older and realising how different he is to everyone. Maybe he won't see that though? Maybe he'll be too disabled and not be self aware?
When you have a baby you think of all the normal things you'll experience with them like pushing them on a swing, family holidays, helping them with homework, watching them play football, even gaining grandchildren from them. I imagine I won't experience any of this with my son now. I feel so nasty for reacting like this but I don't know how to be positive.
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Chromosome 9q34 duplication
14 replies
mummybear1003 · 18/12/2016 02:52
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