Finally heard: How finding a doctor who listened helped change Carter’s life

In some ways, Carter Sousa is like any other 13-year-old: He’s obsessed with videos, loves animals, and enjoys hanging out with his friends. But for much of his childhood, Carter and his parents found themselves struggling with a frustrating and embarrassing problem that seemed to have no clear solution.

Soon after he was born, Carter was diagnosed with an imperforate anus or anorectal malformation, in which the anus and rectum (the lower end of the digestive tract) don’t develop properly. This can affect a child’s ability to have a bowel movement. Although most babies with imperforate anus will need surgery to correct the problem, Carter’s parents were told that treatment wasn’t necessary. “I kept telling his doctors, ‘He doesn’t poop right,’ but no one could help us with that,” says his mother, Erica.

Desperate for answers

As Carter got older, he continued to have issues with controlling his bowels and had trouble gaining weight. As a result, he needed a feeding tube to deliver enough nutrition to keep him healthy. When Carter’s nutritionist suggested a course of action his family disagreed with, they felt frustrated — and stuck.

Desperate for answers, Erica took to the internet, where she found a Facebook group for parents of children with imperforate anus. “When I explained the problem and told them we lived near Boston, they immediately recommended that we see Dr. Belinda Dickie,” she remembers.

Life-changing care

The difference in Carter’s care under Dr. Dickie was remarkable, says Erica. “She actually listened to us and didn’t act like she thought we were crazy.” When Carter was 11, he finally underwent surgery for the problem in the Colorectal and Pelvic Malformation Center at Boston Children’s Hospital, which Dr. Dickie directs.

The surgery included a bowel resection, as well as a procedure known as an appendicostomy. The latter moved Carter’s appendix to the skin of his belly button, creating a passage to the outside of the body. This allows him to receive enemas through a small tube connected to the passage, which helps decrease fecal incontinence and prevent accidents.

No longer hiding

Nearly two years later, Carter is eating by mouth more — in fact, he’s gained nearly 20 pounds. And the surgeries by Dr. Dickie have helped Carter stay clean, which has had huge effects on his self-esteem. Prior to his care at Boston Children’s, Carter would hide at school and at home, embarrassed by accidents.

Now, Carter has a few close friends that he likes spending time with — and even enjoyed his first sleepover party last year because he was finally comfortable. “It’s just amazing,” says Erica. “We’re really glad we made this choice for his care.”

Learn more about the Colorectal and Pelvic Malformation Center.