Beating Liver Disease
Every superhero has a vulnerability, like Kryptonite for Superman. Yet character and courage allow him or her to overcome that weakness (and triumph over evil and injustice).
You might say that’s also true for 5-year old Ryan Ackerman,* one of the extraordinary superheroes at General Hospital for Children. Born with a severe liver malfunction, Ryan has been through major surgery, seven outpatient procedures and countless visits to physicians and surgeons. Yet Ryan has demonstrated heroic strength in fighting both illness and discouragement.
What’s his secret weapon? “I’m brave,” he says.
Each year, nearly 25,000 young superheroes make their way through General Hospital for Children. For some, it’s a straightforward visit, such as a checkup or an immunization update. Other children face daunting challenges, such as a cleft palate, a damaged heart or a liver in need of transplant. Designed to make children—and their parents—feel safe and welcome, the hospital has a specialized emergency department and the region’s only Level III neonatal intensive care unit (NICU), which offers comprehensive care across all specialties and subspecialties for critically ill newborns.
“You can sense the difference the minute you walk off the elevator at General Hospital for Children,” says Henry Leavitt, medical director of pediatrics.
“Immediately, you are greeted by friendly nurses who put you right at ease. You’re in a caring environment with colorful artwork on the walls, and the comfortable rooms accommodate family members who want to spend the night with their child. And we have a playroom staffed by child-life specialists. But what really stands out is the quality care we give our patients. The depth and breadth of care we provide to babies, children and adolescents is second to none.”
Ryan agrees. “They take care of you and make you feel safe,” he says.
Ryan’s medical obstacles began just weeks after birth, when his mother, Lisa Ackerman, grew concerned about her newborn’s fussy behavior. Though friends assured her it was probably colic, Lisa sensed something more serious was wrong. She took Ryan to pediatrician Heather Bailey, MD, and asked her to take another look.
“I discovered that Ryan had an enlarged liver due to an abnormality in the bile ducts,” Dr. Bailey recalls. “He needed immediate surgery in order to survive.”
A cyst in the bile ducts had caused bile to back up and poison Ryan’s liver.
Pediatric surgeon Lester D’Arcy, MD, performed emergency surgery to unblock the bile ducts, but Ryan was left with permanent cirrhosis of the liver. Dr. D’Arcy thought a liver transplant might be needed, but Ryan made such a strong recovery that he has been able to put off that surgery for the time being. Today, Ryan lives a mostly normal life, attending kindergarten, playing with his favorite toys and entertaining his new baby brother. Yet his damaged liver occasionally brings him back to General Hospital for Children for further treatment.
“Ryan’s condition creates veins in the esophagus and spleen that become enlarged and bleed. These occasionally need to be banded to stop the bleeding,” Dr. D’Arcy explains. “Additionally, the enlarged spleen creates problems with immunity and can put Ryan at risk of infection. So we carefully monitor his liver function to make sure he is not at risk for serious complications.”
Lisa says the frequent trips to the hospital can be trying. But the compassionate physicians and nurses know when to let Ryan have some control over his care. In one case, Ryan told the nurses that he was afraid of the tape used to secure the IV to his hand because it hurt when they removed it. He promised he would not bother the IV if they would skip using the tape. The nurses offered a compromise: They would use less tape and then bandage his arm in stretchy blue athletic wrap. Ryan agreed, and the procedure moved forward tearlessly.
“The energy our patients put into getting better and the trust they place in us are inspiring,” Dr. D’Arcy says. “That’s why these kids are true superheroes.”
“Everyone has always been so kind and caring,” Lisa says.
Although patients and family members often express their appreciation to the men and women who care for them, the physicians and nurses say it’s the children themselves who are truly extraordinary.
*Based on a true story. Names and identifying details have been changed to protect the privacy of certain individuals.