Ffredi's Story

Ffredi was born in April 2024, he was a chunky 9lb baby and looked so well. He starting being sick and while the ward midwife’s thought it was odd, all the paeds doctors were sure it was normal. He didn’t pass any meconium and again, were told it would likely happen in no time.

Two days in, a few doctors had been to see him. Happy that he was well and that he’d pass meconium eventually, I was pushing that we should go home. If he was well, what was the problem? 3 doctors came that day and said we couldn’t go home but he was fine. At 11pm that evening, a final doctor came and said he wasn’t happy with Ffredi’s tummy and he should have an x-ray. That changed everything!

He was soon whisked off to Special Care Baby Unit, before being transferred by ambulance to NICU at Alder Hey Children’s Hospital. He underwent days of bowel washouts and was nil-by-mouth, until he was stable enough to have a biopsy. 3 days later, the results came back that he had Hirschsprung’s disease.

We went home doing daily bowel washouts, with a plan for pull through surgery. It was thought that it was Short Segment Hirschsprung’s Disease because he was well and managing with washouts.

Ffredi went into surgery a few weeks ago and the surgeons were surprised to find that his Hirschsprung’s disease affected almost all of his bowel. They were surprised that he had managed so long on washouts and stayed well, other than 1 instance of Enterocolitis. He had the distended bowel removed, had an ileostomy formed and two further stomas - a mucus fistula and a colonic blowhole - to keep the remaining small piece of large intestine alive and to rest so it can used in the future for a reconstruction.

After two weeks of managing his output and dehydration, Ffredi was discharged from hospital to settle into stoma life at home. In December 2024, Ffredi has norovirus which landed us in our local hospital for a week, followed by Alder Hey for a week. We had a poor experience at our local hospital and decided to only travel to Alder Hey if he was ill going forward, as they fully understood his needs.

In February 2025, Ffredi experienced a run of illnesses from Influeza B and rhinovirus to sapovirus while on holiday in Tenerife to rhinovirus again! He had 4 hospital stays during this time, his final stay being 10 days. He experienced severe dehydration and was given antibiotics to avoid enterocolitis. This was a really hard time for us.

We are currently waiting for surgery where Ffredi will have his piece of disused large intestine moved and reconnected - essentially the pull through surgery. He will still have the stoma. We are looking forward to finding out this date.

I started HirschsprungsDisease.co.uk as a space where I could collect information, resources and stories about HD. It can be a really lonely experience and there isn't currently a dedicated charity or specific body supporting families in the UK with HD. I spent hours and hours researching and learning and would have loved a place I could find it all. I also struggled to know the difference between UK-specific information as the treatment and advise varies across the world. Thanks for joining me and for reading.