Evan Simms is an ever-smiling 18-month-old, whose habit of blowing kisses to strangers earns him new admirers everywhere he goes. That strong spirit has served Evan well. Born with kidney disease, he’s been on dialysis since birth and is scheduled to receive a kidney transplant from his mom at Children’s, where he was also treated for liver cancer.
Evan was born at 30 weeks with multicystic dysplastic kidney, a condition in which the kidneys are filled with cysts, resulting in limited function of the organ. Doctors told Evan’s parents, Anne and David of South Wilmington, Illinois, that their baby needed a kidney transplant.
Evan spent his first two and a half months of life in the neonatal intensive care unit of a Chicago area hospital, undergoing 14 hours of dialysis each day to clean and filter his blood. After he was discharged, he required in-home dialysis for 12 hours a day. Anne was referred to Children’s by the mother of a patient who later underwent a kidney transplant at the hospital. Evan was placed under the care of kidney specialist Jerome C. Lane, MD.
Children’s Division of Kidney Diseases is ranked 11th in the nation by U.S.News & World Report. The hospital was the first in the Midwest to perform a kidney transplant on a pediatric patient, and with more than 600 kidney transplants performed to date, the Kidney Transplant Program it is one of the nation’s largest, and has one of the world’s best post-transplant survival rates.
Evan’s first inpatient admissions at Children’s were for the treatment of a persistent case of peritonitis, an infection of the abdominal cavity caused by an infection at the site of the catheter used for his dialysis. “From the moment we got to Children’s, we felt a sense of relief,” says Anne. “We just knew we were in the right place.”
Anne had been approved to donate one of her kidneys to Evan, and transplant surgery was set for July 18, 2011. In late June, Anne and David brought their son to Children’s Emergency Department after he began experiencing stomach pains. There, a physician detected a mass in Evan’s abdomen. Tests indicated it was a hepatoblastoma, a rare form of liver cancer. The transplant was postponed, and Riccardo A. Superina, MD, Head of Transplant Surgery and his team removed half of Evan’s liver. Fortunately, the tumor was rated as low-grade, and chemotherapy was not indicated.
“Dr. Superina told us that the discovery of the tumor was actually a blessing in disguise,” says Anne. “Otherwise we would have both been in surgery at the same time when they discovered it — me at Northwestern Memorial Hospital and Evan at Children’s.”
After his tumor was removed, Evan needed to switch from peritoneal dialysis, in which the blood is cleaned and filtered from within the body, to hemodialysis, in which the blood is filtered through a machine called a dialyzer. Fortunately, he was able to receive these treatments at nearby DaVita Children’s Dialysis Center, which has a longstanding relationship with Children’s. According to Craig B. Langman, MD, Head of Children’s Division of Kidney Diseases, the center is the only one in Illinois providing this type of kidney dialysis for infants and young children.
During Evan’s three-week hospital admission, Anne stayed at his bedside the entire time. David and Evan’s 3-year-old sister, Maddie, visited on weekends, while Anne’s mother and mother-in-law took turns staying at nearby Ronald McDonald House and visiting the hospital each day.
“I begin to choke up when I think about all the things that the staff at Children’s has done for our family,” says Anne. “From the doctors and nurses to the cleaning staff, all the people at Children’s try to bring smiles back to faces that have lost them. They get to know each child, and they never treat them as if they were just another patient.”
Evan’s family recently received good news. Although they were initially told it could take as long as a year to reschedule Evan’s transplant, the surgery is now scheduled for late September, under the direction of Dr. Superina, who is also surgical director of the Kidney and Liver Transplant Programs and the Robert E. Schneider Chair in Transplantation.
“Evan’s illness has been such a life-changing experience,” says Anne. “So many people take having healthy kids for granted, and they don’t ever think about what would happen if they got sick. You have to cherish every moment and every milestone with your children. Children’s really holds a special place in our hearts, and we’re so grateful for all the support we’ve received.”
Thanks to the Brighter Futures Challenge for Cancer and Blood Disorders, a challenge grant in support of Children's Memorial Center for Cancer and Blood Disorders, an anonymous donor will match new and incremental gifts directed to the hospital's cancer program dollar for up to $150,000 each year for three years. For more information, contact us at 773.880.3796.
Story orignally appeared in the September 2011 issue of Heroes Update.