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URMC / Golisano Children's Hospital / Ways to Give / Strong Kids News / March 2018 / Specialized Support: Nutrition Clinic Guides Families Through Long-Term Challenges

Specialized Support: Nutrition Clinic Guides Families Through Long-Term Challenges

Michael shows Dr. Gabel his stomachSpinning around happily in the doctor’s chair, his favorite books clutched to his chest, Michael spots a familiar face walk into the room.

“Dr. Gabel!” he exclaims, and within moments, he’s lifting up his shirt to show her his tummy, his scars, and his feeding tube.

Clearly, he’s used to the routine.

Michael makes a trip to the doctor’s office at least once a month to see a specialized group of caregivers — the Pediatric Advanced Nutrition Support (PANS) team — who work to address the many nutritional challenges he faces.

Michael was adopted, and his parents don’t know much about his early days. But they do know that he was born with gastroschisis, a birth defect that caused his intestines to stick out of a hole beside his belly button. He had several surgeries as a newborn to fix the problem, but even after surgery, the condition often leads to long-term challenges with eating, digesting, and absorbing nutrients.

For now, Michael receives all his nutrition through a feeding tube, but he’s working on trying new foods so his body can become used to eating and digesting.

“It’s an ongoing battle. He’ll do pretty well for a few months, and then, he’ll flare up and lose weight again,” said Maria, Michael’s mom. “But his team here has been with us every step of the way, and they are very supportive of our own goals for him.”

Team Approach

Michael with one of his favorite toysThe PANS team, which includes a physician, nurse practitioner, two registered dietitians, and a social worker, is focused solely on caring for children like Michael who need ongoing, specialized support for gastrointestinal and nutritional issues.

It’s the only clinic focused solely on nutritional support and medical care in Upstate New York, and children and their families travel from 32 counties across the state and as far away as Arizona, Pennsylvania, and South Carolina for its services.

The team serves a wide range of patients, including premature infants who may be working on transitioning off a feeding tube, patients with developmental disabilities or genetic syndromes who often have nutritional problems, and children who are recovering from abdominal surgery.

“Achieving adequate nutrition for these kids is a real struggle, and for many of them, there’s no textbook that has the right answer,” said Megan Gabel, M.D., medical director of the PANS team, who works closely with nurse practitioner Colleen Hill-Sober. “We end up learning more from our patients than we can from medical literature — and caring for them is what has allowed us to develop our own expertise.” 

The clinic was founded in 2009 by Marilyn Brown, M.D., to help fill the gap for children who are able to leave the hospital, but still require extensive nutritional support. That first year, the team cared for 120 patients. By 2011, that figure had doubled, and now, the PANS team cares for more than 700 patients every year.

“Much of that increase can be attributed to the growth of our NICU,” said Gabel. “More extremely premature infants are surviving than ever before, but they often have immature gastrointestinal systems, and as a result, need long-term care.”  

Because of the support the PANS team provides, many of those babies are able to leave the NICU sooner — and they’re less likely to have to be readmitted to the hospital.

A Family Affair

Dr. Gabel, Michael, and Michael's mom in the exam roomThe NICU is a familiar place for the Colons, who knew the ins and outs of Golisano Children’s Hospital long before adopting Michael. Their biological daughter, Maiya, was also born prematurely and suffered from necrotizing entercolitis, a devastating intestinal disease that often affects preemies and requires surgery.

It was during one of Maiya’s many return trips to the hospital that the Colons first met Michael. At the time, Michael was stable enough to leave the hospital, but was part of the foster care system and didn’t have a home to go to yet.

“We came to know him pretty well, and we all just kind of fell in love with him,” said Maria. “When we found out exactly what was going on, we decided to apply to become his foster parents.”

Michael was one-and-a-half when he left the hospital for the first time, going from around-the-clock care from nurses and doctors to spending his first night at his new home with his new family.

“The PANS team really made that transition a lot smoother,” said Maria. “They managed his discharge and picked up right where the hospital left off.”

Michael has had his fair share of ups and downs since then, but now, he’s doing well. If he’s not lifting up his shirt to show off his belly, you’d never know how far he has come.

“I’ve known Michael since he was a baby, so to see him thriving now — that’s what makes our work so rewarding,” said Gabel. “He is just the sweetest kid.”

3/19/2018

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