Persevering after the unimaginable: Jacob’s journey with short bowel syndrome

little boy after treatment for short bowel syndrome

Yankees or Red Sox? Giants or Patriots? Rangers or Bruins? Seven-year-old Jacob Hersko and his physician, Dr. Christopher Duggan, may playfully debate whose hometown is better, but in one area, it’s clear that Boston comes out on top: “Jacob loves coming to Boston Children’s Hospital,” says his mother, Rachel. “He says it’s like going to Disney World.”

When she was pregnant with Jacob, Rachel and her husband, Geoff, never anticipated that they would be traveling to Boston every few months. The little boy was born at full-term, with no apparent complications. But when he was just a week old, the unimaginable happened: He was diagnosed with necrotizing enterocolitis (NEC), a serious intestinal illness in babies that results in the death of intestinal tissues.

family of boy treated for short bowel syndrome
Jacob and his siblings

Ready for a new approach

Although emergency surgery removed the diseased intestine, Jacob was left with short bowel syndrome as a result. This condition makes it difficult for the body to absorb the nutrients it needs. The little boy, who had lost about 80 percent of his small intestine, received nutrition through a feeding tube and was in and out of his local hospital for more than a year.

By age 2, he had “reached a standstill,” says Rachel. “His doctors in New York said they had never seen such a severe case of NEC in a full-term baby. I think this was bigger than they were experienced to handle.” The family, who had heard about Boston Children’s Center for Advanced Intestinal Rehabilitation (CAIR), was ready to try a new approach.

Jacob's biggest challenge with short bowel is eating

‘Such a relief’

When they arrived in Boston, however, the Herskos were in for a surprise. After reviewing Jacob’s case, Duggan determined that the toddler’s greatest challenge was mainly that he just needed more calories. “We were shocked,” Rachel remembers. “I said, ‘You must have the wrong child.’ It was such a relief.”

Since 2013, Jacob and his parents have returned to Boston Children’s every few months, and keep in touch with Dr. Duggan, nurse practitioner Danielle Stamm and the rest of the CAIR team by phone in between visits. “It really feels like everyone at the hospital is there for the kids, from the doctors to the housecleaning staff,” says Rachel.

short bowel syndrome care
Jacob and his mom

Grateful despite the challenges

Today, Jacob’s greatest challenge remains his eating. He still grapples with nutrient deficiencies and is small for his age. “It’s a daily struggle for kids with short bowel syndrome,” says his mother. “There are lots of ups and downs, but we’re grateful that he doesn’t have any other major problems.”

In spite of it all, Jacob has persevered. A smart kid who doesn’t like to miss school for doctor’s appointments, he’s an avid video gamer and enjoys watching sports and playing with his older sister and younger brother. “For the most part, he’s just a regular 7-year-old boy,” says Rachel. “We’re so lucky to have him here.”

Learn about the Center for Advanced Intestinal Rehabilitation.