Apr 1, 2019, 4:12 PM
Jarod v2

Jarod was born on the 4th of July 2008. He was a healthy weight of 9 pounds 14 ounces. He seemed like a perfectly healthy newborn, other than his urine was bright orange (we think it was due to his renal dilation he was originally diagnosed with before birth). However, he didn't pass very much meconium.

We went home the day of his birth, and he slept all day. I assumed this was normal. He didn't want to feed, he was very sleepy. That night he started vomiting lime green bile and was uncomfortable. His cries were different. I thought he may have caught a stomach bug, so I continued to feed him, which he again spilled back up. In the morning, he wasn't interested in feeding, he was very quiet, and sleepy. My midwife was called, and she attempted skin-to-skin contact. He wasn't doing very well, so she sent us back up to hospital. By the time we were seen, he was very dehydrated, and bloated. His skin developed stretch marks from his bowels pushing against his little tummy.

The doctor on duty informally diagnosed him with Hirschsprung’s disease. No one in my family had heard of it. We were flown to another hospital, and he was NBN (nil by mouth – unable to eat or drink anything) for three and a half weeks, with a nasogastric tube drawing out grass green bile. He was put onto total parental nutrition and lipids. His bowels got so distended, you could feel the ripples through his skin – it felt like when you ran your fingers over top of your other hand’s fingers, it was quite disconcerting.

Finally, after going through biopsies, he was formally diagnosed with Hirschsprung’s disease which affects 1 out of 5000 children. He then had a stoma put in and then at five months had a sauve procedure to put him back together again. He’s had more biopsies since then, and now has a chait tube because he's still dealing with bowel problems. He is susceptible to stomach bugs, bloating and he has to wear a pullup at night due to incontinence.

His chait tube can be pulled out easily, so he’s always aware of it. He has given it a nickname “Tylar” so he can talk about it to us in front of others. His stomach has a hockey stick scar on the right, and scars by his belly button. What would be great is if doctors had more understanding towards parents who know when something isn’t right with their kids, and have basic knowledge on how to deal with tubie children. He’s an amazing kid that really pushes himself to be like other kids.

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