Not “just the way it has to be:” Treatment of Hirschsprung’s disease

Matthew Swan is a third-grader with a rare and serious congenital condition called Hirschsprung's disease. It limits the ability of his large intestine to process food. Doctors near his Idaho home had told him to eat a high-fiber diet and use laxatives, which hadn't helped.

Matthew's mother couldn't find specialists near their home, and so had been taking him to a children's hospital in Michigan. But Matthew still got chronic intestinal infections that required frequent visits to the Emergency Room, and prevented him from attending full days of school.

"We were told that this was just the way it has to be," said his mother. She researched colorectal programs, spoke to other parents, and chose to come to Cincinnati Children's Hospital. Doctors there realized Matthew has an exceptionally rare form of the disease, and stopped the high-fiber diet and laxatives. They performed surgery and gave Matthew other forms of help to better control his bowel movements.

Staff at Cincinnati Children's Hospital see part of their job as helping each patient to live as normal a life as possible. That means helping patients like Matthew to remain continent. Not doing so would be a "glaring deficiency," in the words of Dr. Marc Levitt at CCH.

Advice to mothers: Matthew's mother was unwilling to accept the conclusion that nothing could be done. As a patient advocate, you should research alternative places to get treatment, and ask other parents, as she did.

Read more from Reed Abelson’s article in today's New York Times.