At Mindy Demichele’s 29-week, routine ultrasound, her obstetrician noticed a blockage in her baby’s small intestine – a problem that was believed to be easily fixed turned out to be a life-threatening condition for her son, Nicholas.
Nicolas, who was born at a suburban hospital on March 26, 2004, had only four inches of small bowel (the average length of small bowel is 10 feet). In order to help Nicolas receive the nutrients he needed to stay alive, doctors put him on a nutritional drip called total parenteral nutrition (TPN), but it was only a short-term fix. He could not be on it indefinitely because of the possibility of severe side effects, including liver damage.
“The doctors told us there was nothing more they could do and suggested we contact Lurie Children’s,” says Mindy. “The hospital had an intestinal transplant program and offered us a hope that we hadn’t had before.”
Immediately, Nicolas was listed for an intestinal transplant, and nine months later — two weeks before Christmas — the family received a call that an organ was available. The 12-hour surgery under the direction of Kishore Iyer, MD, was a success and a month later Nicolas went home. “That was the one thing I asked the medical team, ‘Can you make him better so I can take him home for his first birthday?’ and they did,” says Mindy.
Over the last several years, success rates for intestinal transplant have improved dramatically. One-year survival rates for patients after intestinal transplant are more than 85 percent, which is comparable to liver transplant patients.
Lurie Children’s program is one of the few in the nation dedicated to caring for children with an improperly functioning small bowel (small intestine). Intestinal failure occurs when this essential part of the digestive system cannot absorb nutrients and fluids. A child with intestinal failure needs long-term nutritional support. Lurie Children’s has performed 16 intestinal transplants since the program started in August 2004. The trend now is to manage or rehabilitate the bowel so a transplant is not needed.
“We are committed to avoiding intestinal transplant if possible, but in Nicolas’ case there was just not enough bowel to work with,” says Valeria Cohran, MD, Medical Director of the Intestinal Rehabilitation and Transplantation Program at Lurie Children’s, and a national leader in the specialty.
Over the last 12 years, about 90 percent of the program’s patients have avoided transplant surgery through intestinal rehabilitation. Of those patients, 95 percent no longer need feeding through TPN. This avoids the cost and possible complications of TPN. When an intestinal transplant cannot be avoided, the survival rate for patients at Lurie Children’s is well above the national average of 66 percent at three years.
Dr. Cohran considers Nicolas a poster child for the program because he is now 11 years post-transplant and is doing well. The Demichele’s consider him their miracle child. “My husband and I are so grateful for Drs. Iyer and Cohran, and the entire gastrointestinal team at Lurie Children’s. We also would like to thank the family that gave us the ultimate gift of life. Nicolas is truly our miracle,” says Mindy.