A baby dies in Indiana about every 14 hours. Rowan Breyts was not one of them.
He came dangerously close, however. He was born last April to Jess Novac and Daniel Breyts when Jess went into labor at only 23 weeks’ gestation. She delivered Rowan at a hospital in Crown Point, Ind., and he was transferred to a hospital in Illinois days later.
Rowan weighed only 1 pound, 6 ounces, tiny enough to be considered a “micro” preemie. At that size, there are dozens of challenges, and Rowan was dealt one of the toughest: Necrotizing enterocolitis (NEC), a condition where intestinal tissue begins to die. Bacteria set in, and Rowan’s immature immune response was not equipped to deal with this attack on his tiny body.
PREPARING FOR GOODBYES
Jess and Daniel were told to start planning his funeral, and the decision was made to stop aggressive life-saving measures. Then, something happened: Rowan showed the tiniest of signs of getting better. He used his pacifier and smiled for the first time. Already on a gut-wrenching roller coaster ride of emotion, Jess and Daniel used this miniscule crack in the door of hope to exhaust every single option. “If he’s not giving up, neither will we,” resolved Daniel.
They made a pivotal decision to call Riley Hospital for Children at Indiana University Health. At the hospital in Illinois, he was given a one percent chance of surviving long enough to be eligible for a transplant, the only option left on the table. But then the Pediatric Gastroenterology team at Riley reviewed his case. Although two previous surgeries revealed that Rowan had no viable intestine, Riley Pediatric Surgeon Alan Ladd, M.D., who is Co-Director of the Intestinal Rehabilitation Program at Riley, consulted with his team and they decided to operate.
Rowan was still tiny—only about three pounds. Jess and Daniel waited anxiously through another surgery. Afterwards, they heard news they had not expected: “Dr. Ladd told me they saw a lot of pink viable intestine which was the exact opposite of what we had been told,” said Daniel.
“The doctors in Illinois had sort of given up on him,” said Dr. Ladd. “But we found something during Rowan’s surgery that we didn’t expect. Scarring from his previous surgeries protected him from the infection. We salvaged 71 centimeters of his intestine.”
How could the prognosis from the first hospital be so vastly different from the prognosis at Riley? “What probably happened,” said Riley Pediatric Gastroenterologist Charles Vanderpool, M.D., Rowan’s current physician and Co-Director of the Intestinal Rehabilitation Program at Riley, “was even though he was on a comfort care regimen, he was probably still receiving some medicine. With medicine and support, it can be difficult to tell if intestinal healing is happening. The healing process of the intestine can be subtle and requires expert care to continue.”
For a family to be given a death sentence, then watch their child thrive, speaks to the depth of expertise at Riley. Today, after a 209-day stay at Riley, Rowan is home with his family, who relocated to Indianapolis to be close to Riley. He is taking nearly all his formula by mouth, is growing and thriving and will not need an intestinal transplant thanks to the care provided by the Intestinal Rehabilitation Program. This program offers kids with intestinal issues both surgical and medical care, even transplant care when needed. It is the only children’s hospital in Indiana with this type of program. “Rowan’s case exemplifies the cutting-edge medicine and complex cases that Riley Hospital has,” says Dr. Ladd. “We are constantly evolving our knowledge base. Donors’ support expedites all of that.”
To make a gift please visit RileyKids.org