Challenging times witha rare condition for Noah
A Preston mum admits she is still learning about her son's rare condition, which affects one in 5,000 children.
Three-year-old Noah Walton, of Broughton, showed no signs of being ill when he was a baby, but when he was losing weight, his parents, Janet Kidd and Alan Walton, took him to Royal Preston Hospital.
After the third visit the three-month-old began vomiting green bile and was transferred to Alder Hey Children’s Hospital, where he was diagnosed with Hirschsprung’s disease, a condition that affects the large intestine (colon) and causes problems with passing stool.
Janet, 43, says: “Noah showed no signs of being ill and was happy feeding. But there was something grumbling away as he was losing weight.
“We went to Royal Preston Hospital twice for him to be checked over and everything seemed to be okay until the third time as it was obvious something was not right.
“He was vomiting green bile after a few hours and we were rushed in an ambulance to Alder Hey.
“He had a barium x-ray, where he had dye going through a tube through his nose to his intestines to see where the blockage was.
“Doctors couldn’t find anything, so they had to check the other end and that was when they found a blockage in his large intestine and bowel.
“Noah then had to have a bowel wash out using syringe tubes and saline solution until he became better and had put on weight, ready for surgery.
“It was a very upsetting time when he was in neonatal with tubes everywhere.”
Noah was in Alder Hey for three months until he was deemed fit for surgery and he had 10cm of his bowel removed via the ‘pull through’ method.
Janet adds: “After that, Noah was able to poo normally, however he does face periods of incontinence, especially when he gets a cold, an ear infection, sickness or diarrhoea.
“These bugs affect Noah in a big way and it can take two weeks to a month to get over. He can go through bouts of having a runny nose, having a high temperature, vomiting and diarrhoea.
“He takes medication so his stool is soft and he can pass it normally. He is always thirsty as he had the part of his bowel removed which absorbs water.
“A bad day can be when we have to change Noah 16 times and put him in a pull up nappy.
“I am still learning about it all myself. This condition affects one in 5,000 children and I don’t know anyone else in the area. I have come across one or two in other areas.
“If anyone else is out there, I would be happy to speak to them.
“I went to a group arranged through Alder Hey and met a few affected children. It was then I realised how lucky Noah was as some children have had larger segments of their bowel removed and they need stoma bags. It was a real eye opener.”
Janet is now fund-raising for Alder Hey Children’s Hospital as a thank you for the support and treatment Noah received.
She adds: “We spent a lot of time there. We go every three months and he will continue under their care until he is 18. It is so important for us and Noah to say thank you.”
•Hirschsprung’s disease is a rare condition that causes poo to become stuck in the bowels. It mainly affects babies and young children.
It can cause severe constipation, and occasionally lead to a serious bowel infection called enterocolitis if it’s not identified and treated early on.
Symptoms of Hirschsprung’s disease in a baby include failing to pass meconium (dark, tar-like poo that healthy babies pass soon after being born) within 48 hours; a swollen belly and vomiting green fluid.
Signs in older infants and children include a swollen belly and a tummy ache; persistent constipation; not feeding well or not gaining much weight.