Harrison's Story

Laura Warnes, Mum to Harrison, tells us her story about Harrison's diagnosis, care and ongoing battles with Hirschsprung's disease.

My name is Laura Warnes and this my amazing son Harrison. Harrison has Hirschsprung’s disease and I'd love to share his journey.

I never forget the day we got told our son has this cruel disease. It was all so new and it felt like nobody knew nothing about it. This is why I think its so important we share the stories of the amazing warriors with Hirschprung's disease.

Harrison is 8 years old and was born on a cold morning on the 8th November 2016 ( 4 weeks early). He was just so perfect. With Harrison being born prematurely, they wanted to keep him in hosptial, to keep an eye on his feeding. This is when our nightmare started, Harrison started the 'green vomits', his tummy was very distended, and he got rushed to Queen's Medical Centre neonatal unit for more tests.

Harrison was initially diagnosed with necrotising enterocolitis (NEC), which is an a infection in the bowel, but Harrison deteriorated and become very poorly due to his bowel perforating. He was rushed to theatre and had his first stoma, all at only 3 days old.

As parents we were heartbroken. This was all new to us, and all we wished for was a healthy little baby boy, but we knew this stoma saved his life. It was very challenging at times getting used to the stoma and the constant bag leaks, but we finally got all the correct products that suited Harrison's stoma care.

We then had a date scheduled for his stoma reversal surgery. We were scared but also happy that Harrison would no longer need the stoma.

Harrison was just over a few months old when he had his reversal. The surgery went well, but the recovery was hell. Harrison wasn't recovering well and became very poorly. He wasn't opening his bowels, he got an infection from his (?) line, and he was in alot pain. Harrison looked so poorly, and as his mum I knew something was wrong.

Harrison then got rushed for a x-ray in the early hours of the morning, and to our horror we got told Harrison's bowel had perforated again and was leaking inside his body. This was the first time I thought, "This is it".

The on-call surgeon said that Harrison needed emergency surgery as soon as possible. Harrison was on morphine and ketamine for the pain, and then got rushed straight to theatre.

Wow. He was down there for hours and hours. As parents, we felt broken and just prayed for our son to be ok. Whilst waiting, his amazing consultant, Mr Colliver, came and spoke to us. He was confused as to why this had happened again, and this is the first time we heard the words 'Hirschsprung’s Disease'. He let us know that Harrison would be tested for the disease, in order to rule it out as a cause of his bowel perforations. Harrison had the test and also had another stoma from all the trauma his bowel had endured. Harrison was so poorly and took a long time to recover, but eventually we got our beautiful boy home.

A month passed by and we had a clinic appointment with his consultant. This is when he told us that Harrison has the worse case of Hirschsprung’s disease there is. His whole large intestine was infected and needed to come out and it would be a big surgery...again! Me and his dad felt so deflated and useless for our little boy. We wanted to take it all away for him and we hated that he needed more surgery. But we knew was Harrison was a fighter and we had to keep going for him.

Once home, we did all our research on Hirschsprung’s disease as we had never heard of it. That's when we found a charity page called CHAMPS and wow, what a huge help it was! Being able to talk to other parents who understood what we were going through meant everything to us.

Harrison was just over 1 year old when he had his pull through surgery and spent 8 hours in the operating theatre. It felt like days! The surgery went well and he recovered in intensive care. We found out that the surgeons has to leave some of his dead bowel inside his body, because if they didn't, then Harrison would have no control of his bowels and they would constantly leak, causing sore skin around his bottom.

They weren't kidding! Harrison would constantly open his bowels and it was like water; his bottom became so raw! It was incredibly painful for him. We had to constantly bath him in salt and allow him to have no-nappy-time. He also got prescribed some strong barrier cream called Ilex, which helped, but he was constantly opening his bowels, and every time would cause a awful nappy rash.

Harrison has in the mean time been taken to the operating theatre to have Botox put into his dead bowel, as he had a number of blockages and the muscle relaxation from the Botox has worked wonders for preventing this!

Now, at 8 years old, Harrison is an energetic and loving boy, who is football mad and enjoys all sports. Harrison still has daily battles with Hirschsprung’s disease; his stools are still like water and he opens his bowels up to 12 times a day (on a good day). He's now on a medication called loperamide to try and slow his system down and reduce his output. We have to be very cautious with Harrison, especially when it comes to sickness bugs as these can floor him and he ends up being in hospital due to dehydration. He also has his episodes of enterocolitis which makes him so poorly, and is a very scary time. But as his parents we have become the experts and know what to look out for.

Harrison also struggles mentally with coming to terms with the disease, but we always remind him how strong and amazing he is!

We live in fear most days with this disease, and I'm sure a lot of parents can relate, as Hirschsprungs's disease can be so unpredictable and can make Harrison very poorly out of nowhere.

We are so proud of our Hirschsprung’s disease superhero Harrison Warnes. He's been through so much,and he still thrives, and everybody who meets him adores him, with his big smile and bouncy curls.

I'm sure Harrison's journey isn't over, but the most important thing is to stay strong and positive and always keep track of those bowel movements 🤣. I'm sure everybody living in a home with Hirschsprung’s can relate - the one topic you mainly talk about is bowel movements.

Thank you for letting me share Harrison's story and his journey so far.

Laura xx