Hirschsprung's Disease and your experience

[gollyimholly]

Hello lovely MN

My beautiful boy was born last week after an uncomplicated pregnancy and birth. At birth he seemed completely healthy and passed all his top to toe checks. We had a lovely first two days until we were told they suspect he has Hirschsprung disease. He's now in NICU about to have a rectal biopsy. I am utterly heartbroken. He has been nil by mouth for four days now, crying his eyes out hungry. This is such a shock to our system as it has come so out of the blue.

If there's anyone who has any stories about their experience with Hirschprung disease please could I hear them? I don't mind positive or negative - it will be useful for me to become familiar with this new reality.

Thank you xx

My nephew was diagnosed with HD but you’d never know, he’s in his teens now and lives a perfectly normal life. Wishing you all the best OP

Thank you 🥹 that's so wonderful to hear all is well and healthy for him 🥺
do you know how old he was when he had to have an operation?

I know of a little boy with this. I can’t remember when he had his surgery exactly but he’s doing very well now, you’d never know
hope you’re able to look after yourself. I was in NICU with my daughter so I sympathise x

Hello Mummy- congrats on the birth of your beautiful son.

It’s scary being where you are - but from someone 4 years along a very challenging path - I want you to know your child is incredible, will do well and will bring so much joy to you.

His path won’t be linear but you’ll all come through it stronger.

Please believe me when I say bowels are adaptable and grow - so it’s a great place to have trouble as a new born. There is lots of hope as they grow!

@gollyimholly as it’s such a rare disease best place for other families is Facebook & Tom’s Hirschsprung’s podcast is also a great resource.