Evangelos’ Story: Expert Care Offers Hope for Short Bowel Syndrome
Evangelos was born at just 25 weeks, weighing 1 pound 6 ounces, in July 2017. Within weeks, his parents were told that their newborn had developed Necrotizing Enterocolitis (NEC), a common condition that occurs in micro-preemies where part of the bowel is damaged and causes muscles in the intestines to die due to an infection.
As a result of NEC, Evangelos was officially diagnosed with short bowel (gut) syndrome. This means he has just 16 centimeters of small intestine remaining, which is where nutrients are absorbed—less than 10 percent of small intestine that a full-term infant would have.
In December 2017, Evangelos was transferred to Lurie Children’s where transplantation expert Dr. Riccardo Superina, performed an intestinal obstruction/scar tissue removal surgery.
“Dr. Superina helped us piece together Evangelos’ condition,” Evangelos’ mother Haroula said. “I was completely at ease knowing that Evangelos was in the best of hands. Having a child with a medical condition is so isolating at times and overwhelming, but the nurses, therapists and GI team helped me realize how my son will succeed and flourish.”
“Getting Evangelos to the point where he can sustain his growth and health by absorbing food from his gut and not rely on intravenous nutrition requires a great deal of effort from all his caregivers,” Dr. Superina said. “From a surgical perspective, our job was to maximize the potential of the bowel he had left when we relieved the obstruction and restored continuity.”
Lurie Children’s Intestinal Rehabilitation program is designed to take care of kids like Evangelos who have short bowel syndrome and intestinal failure where a multi-disciplinary team of gastroenterologists, nurse practitioners and pharmacists collaborate together. Years ago, infants like Evangelos had to undergo liver and intestinal transplants or could pass away from liver disease, said Dr. Valeria Cohran, Medical Director, Intestinal Rehabilitation and Transplantation. However, today with current knowledge in regard to intestinal rehabilitation, patients with ultra-short bowel syndrome can be tapered from TPN. “Our program has been very successful, 90-95 percent of patients have been tapered from Total Parenteral Nutrition (TPN),” Dr. Cohran said.
“Since his condition is lifelong, I don’t want him afraid of the hospital environment. We are fortunate to have Lurie Children’s care for our child to keep him healthy and thriving again,” Haroula said.
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