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Im not sure if this is the appropriate board for this question, but i need to start somewhere!
My parter and i have been talking about TTC our first child together (i have a DD from previous relationship who is 4). My partner also has Hirschsprung's disease. I am aware it is genetic and from what his mother has told me it is pretty rare in australia. His brother also has it, and has 2 children of his own one of those who has Hirschsprung's. I have tried to talk to his ex about how it was raising a child with that kind of disorder but we arent really close. I was wondering if anyone here has a child with Hirschsprung's disease and any advice/info you may have. I am aware there is a high chance our child (if we get pregnant) could have this and want to prepare myself for what it could entail. I've thought about it and i dont have a problem in any way shape or form about having a child with Hirschsprungs, its certainly not going to stop me but i would like to be fully informed.
I think this is the perfect place to post about this. I, personally, know nothing about Hirschsprung's but after looking it up, it seems my two biggest worries would be surgery (to connect functioning part of the bowel to the anus) and the fact that Hirschsprung's patients have higher incidences of thyroid cancer, neuroblastoma, and a few other syndromes they list.
Iin our case and friend's of ours that have kids with genetic conditions, I've seen a lot of guilt associated with hereditary situations. Especially in regard to the surgery and anything where the child is in pain. For that reason, I think the most important part is having someone (not hubby cause he's going through something very similar) that you can talk to about EVERYTHING. Someone you can get very personal with and expose your feelings and such.
I'd also try and really prepare financially. What I saw said that there is a chance of your child requiring colostomy bags and I'd check into how much is covered by insurance and what you'll expect out of pocket and look into whether you have doctors around you that can handle the condition. It'll just make the transition easier if your baby has it and you know there is a doctor near that is comfortable treating it.
Having a child with special needs is not as scary as most people think.
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
Last edited by C&K'sMama; March 10th, 2011 at 09:08 AM.
I know about the surgery the child will need, my partner had it as a baby and so did his brother and his brothers son. The advances in medicine really show in the scars though, as both Cody and his brother have long horizontal scars from being physically opened but my nephew only has 3 small dots and a small cut from the newer surgery methods. I actually havent thought about the financial obligations thanks for bringing that up! Im actually not sure how much of it would be covered and how much id have to pay, thats definitely something i will be looking into as being financially responsible before we start TTC is a big deal for us