Doncaster mum praises care of sons living with rare disease

Kian and Oliver Groom have both needed the gastroenterology and paediatric surgery service at Sheffield Children’s throughout their lives for bowel and feeding problems.

Eight-year-old Kian was just 23 hours old when doctors noticed signs of bowel obstruction. He was moved to the neonatal ward at his local hospital where he was x-rayed, before being transferred to Sheffield Children’s.

Kian’s mum Sarah explains: “It was a difficult birth, I lost a lot of blood and needed transfusions. Kian wasn’t taking milk or feeding properly, and they noticed his vomit was green, which is when they first suspected Hirschsprung’s disease.”

“They waited a few hours to get him stable, ensuring he had the fluids and pain relief he needed before the Embrace Ambulance Service took him to Sheffield. Sadly, I could not go with him as I was too unwell, I found that really difficult.”

Hirschsprung’s disease is a rare congenital disorder of the bowel, most commonly the large bowel, which can lead to severe constipation and intestinal obstruction.

It affects around one in every 5,000 babies born in the UK and is caused by nerve cells not developing through the full length of the bowel. All children eventually require surgery, but Kian is in a particularly rare category for children with Hirschsprung’s disease.

To further support the diagnostic service for conditions including Hirschsprung’s disease at Sheffield Children’s, The Children’s Hospital Charity have recently funded specialist equipment to help children like Kian and Oliver in the future.

Costing £90,000, the manometry stacker evaluates pressure to identify structural abnormalities and probe the functionality of muscles.

The manometry stacker was funded by the Charity’s Children’s Champions, a unique group of individuals, companies and private family trusts who share a passion to help Sheffield Children’s Hospital. Together, they have raised more than £427,000 in their first five years.