Quest Finds Relief in Rare Gastrointestinal Diagnosis and Treatment
A mother often knows her baby best. For Melissa, that mother’s intuition kicked in within the first few weeks of bringing her newborn son, Quest, home from the hospital.
Like many parents, Melissa kept a diaper chart. She noticed instead of full bowel movements, Quest had small smudges in his diaper.
“We’re at two, three weeks, no bowel movement,” Melissa remembers. “At 3 weeks old, he finally had one and I remember hearing him scream. He had extremely hard stool.”
A Lifechanging Diagnosis
When Quest was 5 months old, Melissa received a referral from her son’s pediatrician that would change Quest’s life for the better. They met with Dan McClenathan, M.D., the chief of the Division of Pediatric Gastroenterology, Hepatology and Nutrition at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida.
Quest had three biopsies, two radiology tests, multiple sets of labs and one surgery. Finally, a diagnosis: hypoganglionosis. Hypoganglionosis is a rare intestinal condition characterized by a reduced number of ganglion nerve cells in the gut.
“Ganglion cells are nerve cells in the lining of the colon,” McClenathan explains. “These cells help the colon contract and move. There is a condition called Hirschsprung's where there is complete absence of these cells. In hypoganglionosis, there is very infrequent cells, which is extremely rare.”
Surgical Solutions
At one point, Quest was coming to Johns Hopkins All Children’s on a monthly basis for intestinal cleanouts to remove stool. McClenathan continued to seek a better solution, recommending a gastrointestinal motility specialist — an expert in how muscles move food through the body — in Orlando.
There, doctors found about 20 centimeters of Quest’s large intestine were not functioning. They performed a colostomy, a surgical procedure where an opening (stoma) is created in the abdominal wall to divert stool from the colon through a pouch instead of the rectum.
Melissa says her son, who will turn 3 in July, is doing remarkably well. “He's thriving, he's happy, and has no more tummy aches,” she adds. “My experience with Dr. McClenathan has been nothing short of amazing. He listens. He is willing to investigate our concerns. He saved my baby. I couldn’t be more grateful.”
Expanded Care
Johns Hopkins All Children’s recently acquired the Pediatric Gastroenterology, Hepatology and Nutrition practice.
Although the GI practice has partnered with Johns Hopkins All Children’s for 40 years, McClenathan says the acquisition will make a difference. “I’m proud of being able to care for so many families, and this helps ensure our team will be able to continue to care for kids for generations to come.”
The transition gives patients greater access to tools such as the MyChart patient portal, which connects patients and families with electronic health records and enhances communication with the clinical team. The hospital will be able to build on the gastroenterology program’s success as it expands to a second hospital campus in Wesley Chapel. That campus is scheduled to open in 2027.
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*Presented by Johns Hopkins All Children's Hospital