When Rory was 3 days old he was diagnosed with Hirschsprung’s disease.
The main symptom of HD in newborns is not being able to go to the toilet after they are born. Rory’s HD diagnose to us was a complete shock and we had never even heard of it before.
So what is Hirschsprung’s Disease?
The bowel should squeeze and then relax to push poo along, making you want to go to the toilet. The whole process is controlled by your nervous system. When someone has HD the nerves that control that movement are missing from a section of the bowel meaning that poo can build up and cause a blockage. When this happens this can cause severe constipation and can occasionally lead to a serious bowel infection called Enterociltis.
After Rory was diagnosed with HD he had a pull through which is the process of giving someone a stoma. So instead of going to the toilet in his nappy, he would go in a Colostomy bag. In Rory’s case his first surgery lasted 8 hours due to the fact he has Total Colonic Hirshsprung. He had a section of his bowel removed as well as his colon. For the first 8 months of his life, he used his Colostomy bag until he had a stoma reversal.
This means that now Rory no longer needs a stoma to help him go to the toilet but even through he has had surgery he still has Hirschsprung’s Disease. If you never saw Rory’s scar on his belly then you wouldn’t be able to tell that he even has HD. Although he does have a lot of smelly nappies so I guess that is a giveaway.
Hirschsprung’s is rare and only affects about 1 in 5000 children and is 4 times more likely in males than females.
NHS Hirschsprung’s Disease: http://www.nhs.uk/conditions/hirschsprungs-disease/Pages/Introduction.aspx