Baby with hirchsprungs disease..

[Sweetpea12]

Has anyone any experience of this? My son was diagnosed with hirchsprungs disease a few weeks after being born, he currently has a stoma because his body wasn’t handling washouts he was having and he was quite sick. It’s something I had never heard of before and I feel quite alone in dealing with it all. My son has to have another surgery but I don’t know when that will be and I hate the thought of him having the stoma long term as even that is an issue as the little bags he wears leaks all the time. He’s only 10 weeks old and has been through so much.

Really hoping someone has experience with either hirchsprungs or even a child with a stoma as I can’t find much help online or any wee support groups or anything

I'm so sorry ....must be awful for you and poor DS. No advice, but didn't want to read and run.

Bumping for you OP, how stressful for you all

My eldest ds has hirschsprungs, he's almost 10, had succesful pull through surgery and no stoma now. Feel free to pm me. There's lots of Facebook support groups out there, Champs Appeal is UK based and great. Also Breakaway Foundation for stoma support. Plus other groups. I've been through what you're going through now, it's a hard journey and everyone's story is different. There's a really supportive hirschsprungs parents community out there though.

No advice but also didn’t want to read and run. I’m so sorry you’re feeling so alone in this. Really hope you are able to get some support for you and your lovely boy xx

@pudseypie I will look those up thank you so much. Can I ask what age your son had his surgery? I feel like I don’t even know the extent of my sons condition as so much was thrown at me so soon after he was born. They now think his stoma may also have been brought out in the wrong place as it’s retracted 🙄 so much to deal with and I feel like I don’t get to just enjoy him as he’s either got appointments to be at or someone visiting him and that’s before his bag leaks and causes havoc. Really appreciate the comments thank you

DS was 2 years old when diagnosed, it was suspected at birth though but he had a false negative biopsy. Most children are diagnosed at birth though.
You need a support network of other parents who have been through it. When ds was due his stoma, I phoned Breakaway and they put me in touch with another hirschsprungs mum and we're still in touch now. You should have a stoma nurse who can give you tips on attaching the bag. I used to stick the bag in my bra or warm it up with a hairdryer to help it stick. Also use special tape to stick it down, can't remember what it is called, but i cut it into banana shapes and it worked a treat.
There are a lot of appointments - do you have a specialist childrens hospital? We go to one in the next county as my local health authority isn't specialist enough so we now bypass them completely. You must be under the care of a surgeon? Only when they do the pull through surgery will they be able to tell you how much of the large intestine is affected. Hirschsprungs is rated as short segment (SSHD), long segment (LSHD) and total colonic. Worth bearing that in mind also when you read other people's journeys as all children are effected to different degrees. My ds is SSHD and had the duhamel pull through aged 2. He's nearly 10, plays loads of sports, does everything a child his age does, and just takes a daily laxative. Please do ask if you have any more questions, I'm really happy to help, I know it's a really scary time right now.

@Sweetpea12 hello. Sorry to hear about your experience. I hope your son is doing well and you also.

Can I ask what his initial symptoms were? My son is 5.5 months and always struggled to pass stools. I wouldn’t call it constipated because they’re normal BF poops; loose and watery. Yet he screams for hours, sometimes days not sleeping well until he does it. He always has a lot of wind which can be smelly at times.

We started solids and he’s backed up once more. Do you think this sounds like HD? He did pass stools within 24 hours of his birth and would poop frequently. This started when he was around 2 months old I’d say.

Thanks x

My sons initial symptoms were not wanting to take a lot of milk he struggled to even take 2oz shortly after being born, he didn’t pass meconium in first 24 hours of being born and his stomach was distended at times. The only times he had bowel movements was after he had bowel washouts which he was having those while waiting on Hirschsprung’s biopsy results

I’m on a hirchsprungs group where some children have been diagnosed later and the symptoms can be backed up after eating. Although I did notice some of those people commented their children have food allergies or dairy intolerances

I know in terms of Hirschsprung’s it can affect segments of the colon so the child may poo then other times be backed up depending on which segment is affected. For my son his is long segment so he would never have had a bowel movement without intervention

@Sweetpea12 thanks for responding. I’m sorry you’ve had to endure this. Your son too. I can’t even imagine how difficult it can be at times. I’m sending lots of positive energy your way x

Do you think my sons sounds more like a milk allergy or something like that? I’m literally not getting anywhere with doctors. The GP was to send a prescription for movicol to my pharmacy yesterday, I went by to collect today and he forgot to do it, that’s how seriously I’m being taken. I’ve slept 5 hours in the past two days as he’s up all night trying to poop.

My son does well now he had his stoma reversed there just over 3 weeks ago and so far so good. He has trouble at times with constipation depending on what he’s eaten but nothing that’s needed medication which is good. I find doctors don’t take constipation seriously in children has your sons stomach ever distended at all? Have you tried anything like prune juice or pure orange juice to see if it would relieve him?

I had never heard of hirchsprungs before my son was diagnosed so still very new to me but maybe even have a food diary and see if there could be anything backing him up. I know what it’s like my son cried one night so sore because he couldn’t poo and he ended up having calpol to calm him down but that’s on his surgeons advice

@Sweetpea12 that’s good, the outlook is pretty good to be fair. No distended stomach and feels soft. I’ve given him puréed prines with boiled water mixed in and nothing, that was three days ago. Since then a lot of straining and nothing more. Oh there was a small spot of poop in his nappy and nothing since.

Aw bless him it’s good his tummy is soft. I do think doctors should take constipation more seriously given there are illnesses and diseases linked to the bowel out there and some of them only need a contrast enema to check. Because I’m a member of the HD group I am seeing a lot of people who’s children weren’t diagnosed until 6 year old etc which is crazy to think their child has probably been in some sort of pain all that time

@Sweetpea12 yeah, in read on late diagnosis too. I think this is definitely due to the early symptoms being dismissed. I’ve read people saying their children have been on Movicol or laxatives for years, I can’t understand how they is even ok. I hope I get to the bottom of this soon. Best wishes to you’re son too for the bright future !! X