Dylan: Our little miracle is in the best of hands

Dylan and his parents, David and Diane.

By Diane Bolles-Prasse

Although our son Dylan is only 5, he has experienced multiple organ failure, numerous surgeries and long months in the hospital. My husband, David, and I have been told, “There’s no medical reason this boy lived.” But Dylan truly is a little miracle, one who was given a chance at life thanks to an intestinal transplant at Children’s Memorial Hospital.

Dylan was born with Hirschsprung’s disease, a congenital digestive system disorder caused by the improper formation of nerves in the large intestine. As a result, solid waste backs up, causing partial or complete bowel obstruction. Bacterial infections can also develop and cause serious complications.

Dylan underwent multiple surgeries at a hospital in Rockford, Illinois, to treat his condition. Two hours after his last surgery, he went into shock and needed to be resuscitated. Eventually, he was stabilized, but his precious organs were shutting down. He went into respiratory, kidney and liver failure. Because pediatric kidney dialysis was unavailable at the hospital, his doctors referred him to Children’s in Chicago, where he was transported by helicopter. He was in such a critical stage that we were not allowed to accompany him, so we had to drive two and a half hours to Chicago.

The Division of Gastroenterology, Hepatology and Nutrition at Children’s is ranked 8th in the nation by U.S. News & World Report. Each year its specialists care for hundreds of children with a wide range of common and complex gastrointestinal and liver disorders.

By the time he arrived at Children’s, Dylan had ballooned to twice his normal size because of an infection and fluid buildup. We were told that there was a 95 percent chance he would die that night, but we preferred to look at it as a 5 percent chance he would live, and requested a hospital chaplain to help us pray for our little boy.

Brave Dylan survived the night, and surgeons removed his large intestine and a very large section of his small intestine, and created a colostomy. He was in a coma for nearly a month, and later needed several “clean-up” surgeries to rid him of infections. During his long recuperation at Children’s, we stayed at his bedside during the daytime and slept at the nearby Ronald McDonald House.

Dylan’s doctors and nurses were wonderful, as were the Child Life workers, who brought games and toys for him. Many times, volunteers came to offer respite so we could get something to eat. Finally — after three and a half months as an inpatient — we were able to take Dylan home with much joy.

Because he was missing most of his intestines, Dylan received his nutrients, vitamins and minerals by IV directly into his veins, bypassing his digestive system completely. But time was running out, because he had few usable veins left. In August, Dylan was placed on the transplant list for a small and large bowel.

Children’s Intestinal Rehabilitation and Transplant Program is one of fewer than 30 such centers in the U.S. One of its key goals is to avoid the need for transplantation whenever possible by using medical, surgical and nutritional intestinal rehabilitation strategies.

Finally, in March, we were notified that donor organs were available. We raced to pick Dylan up from school and get him to Children’s, and he was successfully transplanted that evening.

Dylan remained at the hospital for several months, and was discharged to Kohl’s House, Children’s nearby dedicated transplant residence facility, where I stayed with him for eight weeks until we were finally able to bring him home in August 2010.

Today, Dylan is a happy little boy who loves trains, NASCAR and his school for the hearing impaired. He needs to use a walker because he also has low muscle tone, but gets along just fine with it.

Dylan goes to Children’s every three months for follow-ups with members of the Intestinal Rehabilitation and Transplantation team. He is being weaned from the G-tube he uses for feeding, and faces one more surgery next year to reconnect his intestines.

The procedure will take place at Ann & Robert H. Lurie Children’s Hospital of Chicago, which opens in June 2012. We have been eagerly following the new hospital’s progress, and Dave and I often took Dylan to the new hospital site in downtown Chicago to take pictures of it.

Dylan’s prognosis is good, and we are content in the knowledge that our sweetheart is in the best hands at Children’s — the greatest children’s hospital on earth.

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