Kristen Harris’ son, Dayton, was diagnosed with Hirschsprung Disease when he was 10 days old.
As a new mother, Harris didn’t know what to expect with her son, and him being diagnosed with a disease she knew very little about made it really stressful.
“My mother-in-law was a nurse for over 20 years and she never heard of it,” Harris said.
Hirschsprung Disease is a condition affecting the colon or large intestine which causes problems with passing stool, according to the Mayo Clinic.
It typically affects newborns about 1 in 5,000.
Dr. Orhan Atay, gastroenterologist and director of the Gastroenterology Motility Program at the Children’s Hospital of The King’s Daughters, said the disease is a failure of migration of nerve cells to travel from head to body to relax the bowel.
“This disease develops in utero,” Atay noted, adding Hirschsprung Disease has a genetic component, so if one sibling has it, the chances of the other sibling getting it is high.
Another common link is the child having another syndrome such as Down Syndrome.
Atay said symptoms include babies not pooping within the first 48 hours, vomiting bile, becoming bloated and possibly developing inflammation in the digestive tract (enterocolitis).
The gold standard for testing if the child has this disease is performing a rectal biopsy, Atay said, to look for presence of ganglion (protein) cells in the colon.
Once the procedure is done, the child has to learn how to squeeze their bottom and can be referred to a physical therapist, be put on a laxative regiment or get intra-anal botox injections to help the bowel, Atay said.
Atay noted it is not often for patients to use a concealable device to flush out the bowel and although rare, an adolescent or adult can be diagnosed with the disease.
“It is a very treatable condition,” he said, adding doctors will remove the diseased parts of the bowel and reconnect the good part. “There is a still high likelihood they will have higher level of chronic constipation.”
Originally, when Harris took her son to doctors on the Peninsula and even as far as Washington, D.C., she was told Dayton had “dietary issues.”
It wasn’t until her friend, who was living in Pittsburgh at the time, suggested she come to Pennsylvania to find treatment. Dayton was diagnosed and the family continues to go to Pittsburgh for treatment.
While Dayton’s disease is treatable, Harris has to keep her son on bowel management program which includes limiting the amount of fiber he consumes, eating four meals a day within an hour window and taking ammonium to keep him from having accidents.
“Mainly it’s diet,” Harris said. “I try not to restrict the amount he eats.”
She is now trying to raise awareness about the disease by hosting a 5k.
“I never really knew where to start,” Harris said.
Once her co-worker referred her to Steve Amarillo from the Peninsula Track Club, together, they created the Poop Matters 5K.
The event will raise awareness and donations for REACH, a nonprofit dedicated to helping children and families with the Hirschsprung Disease and supporting research.
The Poop Matters 5K is on Sept. 21 at Newport News Park at 8:30 a.m. Registration costs $30 and runners and walkers are welcome.
For more information about the event or to register, visit the Poop Matters 5K website.