Necrotizing Enterocolitis and Short Bowel Syndrome: Chyanne's Story

When Chyanne and her twin brother, Terrance, were born at Pennsylvania Hospital at only 26 weeks, they weighed less than four pounds combined, each no bigger than the palm of their mother’s hand.

They both suffered numerous health issues brought on by prematurity, but Chyanne’s condition was particularly dire.

She spent a month in the NICU struggling to grow before her physicians discovered gas within the wall of her intestine, a sign of necrotizing enterocolitis (NEC), a rare infection that can destroy intestinal tissue by decreasing the flow of blood to the intestine. Chyanne’s stomach became enlarged and she was unable to tolerate feeding.

“It was a surgical emergency,” says her mom, Charla.

Sent to experts at CHOP

Chyanne was transferred to The Children’s Hospital of Philadelphia, a major referral center for infants with severe NEC. CHOP cares for 18 to 20 patients with the condition every week.

“She had a very unusual problem, but for us it’s something that we actually see on a daily basis,” says Christina Bales, MD, an attending physician at CHOP. “So we have experience to draw on.”

Upon evaluation, Bales found that nearly two-thirds of Chyanne’s intestine already had been lost to the infection. CHOP surgeons — some of the most skilled in the country — performed a life-saving procedure to remove the dead tissue and reconnect the remaining healthy portion of her intestine. This surgery often results in a substantial loss of intestine (known as short bowel syndrome), and infants may experience major feeding difficulties and require long hospitalizations.

“Most babies have a couple hundred centimeters of bowel,” says Bales. “Chyanne only has 42 centimeters, so it’s a lot less surface area for nutrients to be absorbed into.”

'CHOP was our second home'

Chyanne spent nine months in the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit at CHOP — one of the nation’s best for care of neonates — on a high-calorie diet of essential nutrients delivered 24 hours a day via a feeding tube.

“It was very stressful,” says Charla of juggling caring for Terrance with being close by Chyanne. “CHOP was our second home.”

When Chyanne had gained enough weight and her care team was sure she was stable, she finally went home and reunited with her brother.

Now 11 months old, she weighs almost 16 pounds and is teething and learning to crawl. Her intestine will grow over time, but she likely will need a feeding tube — in combination with milk feedings at various points throughout the day — for at least two years, as the tube helps deliver food more slowly so her intestine can handle it better.

“Something as simple as eating can be a huge challenge for these kids,” Bales says. “CHOP is unique in that we have a very coordinated team to work with them in a fashion that looks at the whole picture.”

Help for children with intestinal issues

CHOP’s comprehensive, multidisciplinary Intestinal Rehabilitation Program (IRP) — which includes a gastroenterologist, neonatologist, neonatal nutritionist and surgeon — ensures consistent, consultative care across both the inpatient and outpatient settings for patients with short bowel syndrome. The outpatient IRP clinic is held weekly, and all infants are followed closely.

The care team plans to slowly introduce solid foods into Chyanne’s diet within the next month or so and is hopeful that within the next two years she’ll be able to eat normally.

“She’s doing unbelievably well,” Bales says. “She is completely off IV nutrition, which is kind of amazing. She’s starting to hit milestones at home and catch up to her brother. And she’s got a wonderful family that is going to give her a good loving environment. The likelihood that we can get her off that tube is really very good.”