Avery was born a seemingly healthy 8lb 12oz little baby boy, but within days, his health began to deteriorate. He wasn’t very interested in eating, his stomach sounded like a catfight and he was really straining to go to the bathroom.

He was losing weight day after day, yet his pediatrician didn’t seem too worried about his symptoms telling us, “His weight loss is concerning, but not alarming.” Well, for us, a weight loss of over a pound and ½ in 10 days of life was certainly alarming.

Nobody seemed to know what was wrong with Avery, but I had a strong hunch.

I have a brother who died from complications of Hirschsprung’s disease 40 years ago. At that time, my parents were told by doctors that this was not a hereditary condition, but in my heart, I knew that this was indeed what Avery was suffering from. I informed the pediatricians of our family history but it was ignored time and time again.

On day 10 of Avery’s life, we found ourselves rushing him to the ER after vomiting bile. He was immediately taken for an upper GI to ensure that his upper bowel was not twisted. The radiologist told us that his upper bowel looked fine, but his lower bowel was very distended. I, once again, mentioned my brother who died from Hirschsprung’s Disease. This is the first time my words were heard. He said, “Hirschsprung’s Disease is hereditary and we need to do a lower GI and get your son a surgical consult right away.”

Avery was very sick and weak at this time. He was hospitalized for four days while he underwent a rectal biopsy and a series of irrigations.

He was diagnosed with Hirschsprung’s Disease at 14 days old. At 20 days old, Avery underwent an eight hour surgery to do a series of biopsies to find out how much of his colon was affected. At this time, he was diagnosed with total colonic Hirschsprung’s disease. His entire colon and 7cm of his ileum were aganglionic. At 22 days old, Avery underwent another surgery for an ileostomy. We were in the PICU for nine long, exhausting, emotional days.

Avery’s ileostomy was something that we all learned to live with and it became a part of who we were.

The list of public places where we had to change a leaky ostomy bag was endless (and even a little comical). Avery did really well with his ostomy. No Hirschsprung’s related issues until he was nine months old when his electrolytes started to be a little off. It was at this time that Dr. Goldstein decided it would be a good idea to schedule Avery’s pull-through.

He underwent yet another surgery, a modified Duhamel pull-through, at nine and a half months old. Although it was a rough recovery for Avery, getting rid of that ostomy bag was one of the best times of our lives. Avery was finally a bum-pooper. No more onsies, no more medical supply deliveries and no more leaky bags!

Avery has been doing wonderfully ever since his pull-through.

Sure, we have had our fair share of ER visits (and one hospitalization) for dehydration with typical toddler viruses, but overall, Avery is a healthy and happy 21 month old. We go through a lot of diapers and diaper cream, but we have a happy kid with a love for life and that’s all that matters.

Read More