Shortly after Devin was born at 26 weeks, he was diagnosed with necrotizing enterocolitis [NEC], a serious disease that indicated bacteria had invaded his intestine and destroyed his small bowel. At two years old, he was put on the wait list for a new small bowel—and he has been patiently waiting ever since. Now eight years old, if you ask Devin, he’s just like any ordinary kid. “He doesn’t think he’s different,” his mother Lisa said. “Instead, he thinks, ’Where is your G tube?’”
Devin’s entire life has been a case study in beating the odds. Shortly after his diagnosis of NEC, doctors at another nearby neonatal intensive care unit (NICU) told his parents that he had only a few days to live. That’s when he was transferred to Children’s Memorial Hospital (now Ann & Robert H. Lurie Children’s Hospital of Chicago) where he underwent surgery that didn’t yield promising results. Lisa and her husband, Maurice, were told that Devin wouldn’t survive the attack on his intestines, based on the surgical findings. Defying the odds, Devin survived. At three months old, he remained stable in the NICU without a ventilator or total dependence on medication. “He wasn’t diminishing the way we thought he would, so we were still holding onto our faith,” Lisa said.
Then, one day, a nurse heard a rumbling in Devin’s stomach that led his practitioners to perform another surgery, where they discovered that a small amount of Devin’s intestine did survive. He did indeed have a small bowel—17 millimeters, to be exact. “My husband and I were so happy for this miracle,” Lisa said.
“While he doesn’t have as much intestine as we would hope, it was enough for us to operate on and connect to other organs,” said Valeria Cohran, MD, Medical Director of Intestinal Rehabilitation and Transplantation at Lurie Children’s. “That brought us to the diagnosis of short gut syndrome as a result of NEC.”
Now eight years old and in second grade, Devin has been on the wait list for a new small bowel for about three quarters of his life. The wait has been extensive because it is a difficult organ to transplant and there are not many donors small enough to match with Devin. A small bowel transplant will allow him to digest food on his own so he no longer requires total parenteral nutrition (TPN) to supply his daily nutritional intake.
Devin is alive today because medical advancements have led to dramatically improved outcomes for extremely premature babies like him. With expert medical management, he has successfully avoided further complications that short gut syndrome can cause, such as damage to other organs, and continues to flourish. “Doctors originally thought he would suffer from developmental delays and vision and hearing loss, but he’s thriving,” Lisa said.
“His journey has been amazing,” Lisa continued. “We feel so blessed. He’s a special, caring, loving, smart, compassionate child. He’s our miracle.”
The Intestinal Rehabilitation and Transplantation Program at Lurie Children’s is one of the few programs in the nation dedicated to caring for children with an improperly functioning small bowel (small intestine). Intestinal failure occurs when this important part of the digestive system cannot absorb nutrients and fluids. A child with intestinal failure needs long-term nutritional support.