Bodie Finds Help for Complex Intestinal Condition at Cincinnati Children’s—and Goes Boogie-Boarding

Originally, the plan was for Kristen and Matt to spend six days at Cincinnati Children’s. But when a week turned into two months, they didn’t complain. They knew their son, Boden (“Bodie”), was finally at the place where he needed to be. 

Since he was born, Bodie has been in and out of hospitals. It began back home in New Jersey, when doctors diagnosed Bodie at 3 weeks old with an incarcerated hernia that had strangulated his bowel. Part of his small intestine had protruded into his groin area and become trapped there. The surgery that followed was just the first of many Bodie would face in the years ahead.  

Within a week of that first surgery, Bodie was having the same issues: straining during bowel movements, not eating, vomiting and acting lethargic. And, over the course of the next few years, Bodie moved between different hospitals and doctors. He was diagnosed with several food allergies and to help with nutrition and weight gain he received a nasogastric (NG) tube, which allows formula to pass from the nose down to the stomach. 

The NG tube helped some, but “to see your child suffer is terrible,” Kristen said. “He was still vomiting and straining. Every day, he’d eat and vomit. He still wasn’t gaining weight, and his belly was distended.”

Later, a G-tube was placed into the wall of Bodie’s abdomen so nutrition could be directly delivered. He also underwent gastrointestinal (GI) motility testing, which looks at how well the muscles in the GI tract move food through the digestive system.

Intestinal Pseudo-Obstruction Diagnosis

Eventually, Bodie was diagnosed with intestinal pseudo-obstruction, a type of motility disorder that causes the symptoms of bowel obstruction without a physical blockage.

Bodie required a lot of care and at 4 years old he still wasn’t gaining weight or growing. 

“We were anxious,” Kristen said. “Our whole family was anxious. It was very stressful.”

Because Bodie’s progress had again stalled, his gastroenterologist recommended an ileostomy to improve his quality of life. An ileostomy creates an opening in the abdominal wall (known as a stoma) to move waste through the small intestine instead of the large intestine.

Again, Kristen and Matt were overwhelmed, but they decided to move forward with the surgical procedure. Bodie faced complications afterward, though. He lost weight and was incredibly weak, Kristen said. 

Over the next few years, the rollercoaster continued for the family with Bodie vomiting often, leaving him frail and frequently dehydrated. When Bodie reached the first grade, he could barely go to school because he was in and out of the hospital so much. Eventually, Bodie’s care team in New Jersey signaled they were “backed into a corner.” 

“Nothing was getting Bodie ahead, and they said we needed to look elsewhere,” said Kristen. “And then they said they knew a team that could help.”

Finding Help Thanks to a ‘Fresh Set of Eyes’ at Cincinnati Children’s

Over the course of a week at Cincinnati Children’s, Bodie was scheduled to undergo motility and other testing and meet with specialists from the Intestinal Rehabilitation Center.

However, instead of going home after a week, and implementing any recommended changes remotely, Bodie was identified as a good candidate for Cincinnati Children's intestinal rehabilitation program. The team asked the family to stay in Cincinnati for what would be close to two months.

While caught off guard, Kristen and Matt decided to stay. “We had to find hope because, at that point we were kind of hopeless,” Kristen said.

Intestinal Rehabilitation Center Surgical Director Paul Wales, MD, MSc immediately set the tone that Bodie would be the one to lead his care.

“When our team meets a patient like Boden, who has already been through a tremendous amount, we perform a comprehensive assessment. We listen to the details of the past and take that into consideration, yes, but we also make no assumptions and take nothing for granted,” Dr. Wales said. “We look at patients through a fresh set of eyes, and we let them lead us.”

Holistic Treatment Helps Bodie

The goal of the program was to wean Bodie off total parenteral nutrition, or TPN, by working on his nutrition. (TPN is a method of feeding that administers complete nutrition through an IV line.) So, Bodie started on a strict schedule, meeting with physical, occupational and speech therapists regularly to help him tolerate taking in foods by mouth. 

A dietitian on his team also identified an appropriate formula feeding schedule that would fit his daily dietary needs while accounting for his food allergies. And his providers developed a feeding schedule that worked with the family’s daily life and around Bodie’s school day—one that allowed others to help with his care. 

Right away, Bodie started making significant progress.

“We got to work by looking at the whole picture, and by treating his parents as important members of the team—because they are,” Dr. Wales said. “Bodie basically tolerated everything we threw at him as far as nutrition goes. He continued to progress with eating by mouth and tolerating tube feeds. His stoma was working as it should, and his belly wasn’t becoming distended. He just advanced very quickly.”

Alexandra Wall, MPAS, PA-C, a GI physician assistant who played a vital role in Bodie’s care, added: “By the end of his admission, you could see how much his life had changed.”

In addition to meeting with therapists during their stay, Bodie and his family also met other families going through similar situations.

“It was reassuring and also filled me with such hope,” Kristen said. “All of these people advocating for their children and putting their lives on hold. It really drove home that we were finally in the right place.”

By the time Bodie was discharged from the hospital, he was fully weaned off TPN.

“Bodie came to us on more than 12 hours of TPN every day,” Wall said. “He’d never done well off TPN prior to his admission here. And we got to send him home off of it.”

A Game Changer

Before the family returned to New Jersey, Bodie’s intestinal rehab providers set up a remote monitoring app for him and his family. This allowed them to follow his ongoing nutritional status, his intake and output, and his weight even from several states away. The app also made it easier for the Cincinnati Children’s team to collaborate with Bodie’s primary gastroenterologist back home in New Jersey.

“Parents are the best eyes and ears at home, so if they have an inkling that something is going awry and may merit a plan change, we like to back up those changes with qualitative data. The remote monitoring program gives us that data,” Wall said.

Once home, Bodie continued to progress. While he still gets most of his nutrition via his G-tube and keeps hydrated with plenty of water and electrolyte solutions, he also eats solid foods. Some of his favorites are salmon and steak. And, while apple-picking at a farm with his family this fall, he ate not just one apple, but two.

“Just six months ago, he wouldn’t have even thought about eating an apple because it would have made him sick,” Kristen said. 

Bodie also likes playing with friends and participating in a variety of sports, including baseball, basketball, and skiing, which he hopes he can enjoy this winter. 

"He can now attend playdates and participate in all the things typical 8-year-old boys do," said Kristen. "That's something that, until our care at Cincinnati Children's, he wasn't able to do because he was either too sick, or his care required round the clock attention." 

A major highlight came over the summer, when he was able to get his central line removed and went boogie-boarding soon after.

“That was huge for Bodie and his family,” Wall said. “They love to go to the beach, so the fact that he could be in the water without the worry of getting a central line infection was a game changer for him.” 

‘The Best Thing Ever for Our Family’

Bodie’s doing so well that he’s also poised to have his ileostomy reversed and stoma closed sometime in the coming year, meaning he’ll be able to eliminate waste through the rectum again. Dr. Wales said it’s a conversation he and Bodie’s parents have already had but will discuss more seriously during his next visit. 

“That’s a gift Cincinnati Children’s is telling us is possible,” Kristen said. 

She added: “It took a while, but we finally got Bodie to the place he needed to be. And we’re eternally grateful for Cincinnati Children’s expertise, both professionally and personally. Everything is now better for our family. We’re less stressed. We all love seeing Bodie in action. This has been the best thing ever for our family.”

(Published December 2024)