Hirschsprung's Disease - Ryley's story

Hi,

Yes who ever thought we'd be discussing bowel motions and the like huh?! But it becomes second nature once you have a child with Hirschsprung's.

I see you have joined the Hirschsprung's forum, so I will answer your questions there.

Just be assured - you are not alone in this.

I had a perfect pregnancy and was induced at 39 weeks on the 4th July with my twin boys, Joseph and Jesse.Weighing 6.4 and 6.5 pound. Both boys took straight to breast feeding. Jesse passed his first stool but Joseph didnt. After 2 days of Joseph not feeding, pooing or weeing and vomiting bile the nurses at the hospital finally agreed with me that something wasnt right. The doc came and took one look at his belly (wich was quite distended) and he was transferred by ambulance to the JHH NICU. I was totally freaked out!!!
Jesse and I followed in patient transport.
Joseph spent 8 days in NICU before he was diagnosed with HD. Once he was diagnosed, we were allowed to take him home. We had to do daily bowel washes and wait for him to fatten up before he could have his surgery.
August the 4th, Joseph had 10cm of his bowel removed with pull thru surgery. We then spent another 7 days in hospital recovering. We went home and 2 days later he was admitted again as he wasnt passing his wind and was quite bloated. The poor bugger.
He is now home and doing well.
We are dialating him (which breaks my heart as he screams) 3 times a day. We also still have to insert a tube to allow his wind to pass. I cant wait for the day he has a pooey nappy that he has done all on his own.
Its nice to find others going through or have gone through the same. Hope all is well. smile

Hi there
Dilatations aren't fun at all, for the baby or the parents. I hated doing it. We had to use a steel rod and Ryley used to scream blue murder. Though he did get used to it eventually (just when we were allowed to stop!).
Was his recent admittance a case of enterocolitis, have they said? Often they get a swollen/distended belly with EC.
Doesn't Joseph poo on his own then? Ryley pooed almost immediately after his ileostomy was closed (the pull-through having been done a month earlier). Prior to that he had started doing little poos if we were doing bowel wash-outs (which we were doing to clear out his bowel and try and prevent him getting EC as he did have a few bouts of this).
Please feel welcome to join the Hirschsprung's forum I have posted a link to earlier in this thread. There are quite a few mums on there now who can answer all the questions you must have (it can be very daunting hearing your new baby has a condition which is totally unfamiliar to you and very rare at that).
Kind regards
Kristin

Oh, and I was remiss in not congratulating you on the birth of your twins. Double the joy!!!

Hi KMayof2

Yes I found that our son was bloated and refluxy after surgery. We tried everything and then we took him off milk and gave him a lactose free milk and it stopped. Hope this helps.

Regards

Dianne

Hello,

My son Rylee was born at 29 weeks weighing a tiny 2p 12oz. He was diagnosed at 3 weeks old with HD.
He had a stoma for 8 months.
Rylee had his reversal done and lost all of his large bowel.

Rylees health was perfect up until January 2013 we he caught norovirus. Since then he has reoccurring bouts of entrocolitis and C-diff.

He is currently back in hospital with norovirus.

The surgeons have only just decided I need to do daily wash outs at age 3.
It's very frustrating and heartbreaking to see my boy in so much pain.