Over her 2025 spring break, Maria went with her high school choir to Europe, where they performed in Austria, among other countries. “It was so cool,” the 15-year-old sophomore says. “We saw Mozart’s house and museum, skipped through the garden tunnel like in the Sound of Music, and everything!”

Without the expertise of doctors at Children’s Hospital of Philadelphia (CHOP), this sort of trip would have been impossible for Maria, who had dealt with serious bowel and urinary problems her entire life. Even as a young teenager she needed incontinence underwear and special bed-protecting pads every night. 

The unique combination of specialists in CHOP’s NEBULA Program transformed her life. NEBULA stands for NEuromodulation Bowel and UroLogic Alliance and brings together experts from Urology, Gastroenterology (GI), General Surgery, Physical Therapy, Psychology and others to offer children and their families a one-stop shop for those facing complex bowel and bladder issues. 

“As a parent, NEBULA was life-changing for us,” says Maria’s mother, Alice. “The collaboration between Urology and GI was better; they could have on-the-spot discussions right during the appointment.” Cutting down on the number of 30- to-45-minute trips from the family’s home in New Jersey to CHOP was also “refreshing. It made life easier.”

The winding path to CHOP

The family was living in Boston when Maria was born. It was clear soon after birth that she showed signs of intestinal obstruction, and an X-ray showed a swelled intestine below her stomach. A biopsy of her colon showed that she has Hirschsprung’s disease. That means Maria's missing the nerves in her colon that help move stool through her body, so she can't have normal bowel movements. Maria underwent surgery in Boston to remove the part of her bowel with Hirschsprung’s disease.

Maria, who still had problems eating, was also diagnosed with small bowel pseudo obstruction and spent her first 36 weeks of life in the hospital. 

The surgery resolved the Hirschsprung’s disease, but Maria’s GI tract still wasn’t functioning properly. In the meantime, the family moved to Washington, DC, and her care was transferred to a pediatric hospital there. “She was still sick, in and out of the hospital all the time,” Alice says. “She would vomit so much she would become dehydrated and have to be admitted.”

In 2015, the family moved again, this time to New Jersey, close enough to bring Maria to CHOP. Maria’s bowel motility was good — “She goes to the bathroom fine,” Alice says — but she still had frequent, high-volume vomiting that brought her to the Emergency Department (ED). After receiving fluids in the ED, which sometimes required a one- or two-day inpatient stay, she was discharged. “At one point I missed my friend’s birthday party three years in a row because I was in the hospital,” Maria says. “One year in middle school, I missed more than half of the year. I was still making up schoolwork in July.”

Remember April 20, 2023

Maria’s gastroenterologist, John Boyle, MD, noticed the pattern. “He did a deep dive into all her medical records, all those emergency room visits, and questioned the original diagnosis,” Alice says. “He told me, ‘Something’s not right.’ We did more testing, which didn’t give us answers. That’s when Dr. Boyle recommended exploratory surgery to see if opening her up would reveal what was going on.”

Halfway through what would be an 11-hour surgery, NEBULA surgeon Myron Allukian, III, MD, came out to the waiting room to talk to the family.

“He told us that there was one section of her small bowel that didn’t look healthy,” Alice remembers. Pathology tests of that part didn’t show it was more Hirschsprung’s disease; still Dr. Allukian recommended he remove it. “He told us, ‘Honestly, I don’t know if it will make a difference, but it just doesn’t look right.’ It was a small enough section that removing it wouldn’t cause any nutrition problems, so we told him to go ahead.” 

From that day forward, Maria has not been sick and hasn’t had to go to the ED. 

“I’ll always remember April 20, 2023,” Maria says. “It changed so much for me.”

Alice says, “CHOP is special because the doctors go beyond the basics. They don’t rely on something you find in a book. It’s instinct and experience. The care is unbelievable.” 

One lingering problem

Now that Maria’s GI tract was working properly, it was time to address her nocturnal enuresis, better known as nighttime bed wetting.

Maria had accomplished daytime potty training at the typical age, her mom remembers, but she was not dry at night. Because of her GI and bowel problems, which often resulted in loose stools at night, her bed wetting was low on the list of issues to tackle.

The time had come to find a remedy for the girl who’d never been able to go to a sleepover or sleepaway camp.

There didn’t appear to be any physical reason behind her nighttime incontinence, so in addition to medication to suppress urine release at night, NEBULA nurse practitioner Joy Kerr, DNP, CPNP-PC, CRNFA, proposed Maria use a bed alarm. This pad emits a loud sound when it senses the slightest moisture. In just a handful of weeks, that problem, too, was resolved.

“I hated that thing,” Maria says. “It had the loudest alarm! I’d jump out of sleep.”

But it did the trick. “It was clearly a behavioral thing,” Alice says. “As a little kid, her body never learned to react to a full bladder. She’s learned it now.”

Lights, camera, action

Maria’s medical issues didn’t interfere with her participation in local theater and going to day camps for theater in the summer. This summer, she had a role in the featured play at a theater camp for high schoolers in Central Jersey. And, in addition to earning a spot in honors choir for her sophomore year, she also has a part in the fall school play.  “It was a small role, but I was very excited,” Maria says. 

“When I was younger, I tried a ton of sports: soccer, lacrosse, basketball, tennis, golf. I chose theater. It’s my biggest thing,” she says. “I love singing and performing.”

And because of CHOP’s persistent pursuit of effective treatments, there’s nothing to stop her.

(Names changed at family’s request.)