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Henry in Bristol Children's Hospital

Henry

12 Feb 2019, 11:47 a.m.
Patient Stories

Mum Sam met her new-born baby boy Henry in January 2016. However, within 36 hours he had become critically ill and was rushed immediately to a specialist team at St Michael’s Hospital.

Baby Henry

More than two weeks passed by as Henry was treated in Intensive Care but Sam still was unaware of what was wrong with her little boy until the hospital team mentioned Hirschsprung Disease. This rare condition affects one in every 5,000 babies and means the nerves that normally control our bowel movement when passing stools are missing.

After leaving St Michael’s Hospital, daily washouts were required to keep Henry well until he underwent an operation to remove his bowel via open surgery. Before this could happen Henry was struck down with a life-threatening infection, Hirschsprung-associated enterocolitis.

Henry in Bristol Children's Hospital

Henry finally had surgery in March 2016 which revealed that most of his large intestine was affected. After initially showing vast signs of improvement, managing to pass stools on by himself, Henry was dealt another blow and returned to Bristol Children’s Hospital a very sick boy. At this stage he stopped passing stools and reverted back to daily washouts. Mum Sam ‘felt like the operation hadn't even happened.’

Yo-yoing in and out of hospital, Henry embarked on an unsettling few years as the supportive team on Penguin Ward tried out various treatments. In December 2017, Sam and dad Mark made the difficult decision for Henry to undergo surgery yet again to be fitted with a colostomy bag. Despite further trips to Bristol Children’s Hospital life for Henry has vastly improved with his colostomy. Living with a rare disease such as Hirschsprung Disease can be uncertain but Henry continues to astound everyone with his enormous resilience.

Patient Henry who suffers with Hirschsprung Disease

Henry lets nothing get in his way!

Throughout this turbulent time he and fundraising hero Sam have been busy raising money for Bristol Children’s Hospital and have donated over an amazing £4,000 over the years! This incredible story is a shining example of the fearless fundraisers we’re enormously proud have as part of Team Grand Appeal.

Child with stoma bag