A lifetime of care

Children's treats kids born with congenital heart defects into adulthood

Congenital heart defects — structural problems present at birth that change normal blood flow through the heart — are the most common type of birth defect. Each year, more than 35,000 babies are born with congenital heart defects in the U.S., but thanks to significant surgical advances developed over the last 40 years, many of these children have lived to adulthood.

In this respect, Seth Dickey, 27, and Kyle Morgan, 25, are pioneers. Both had life-saving surgeries at Children's when they were children and are still patients at the hospital. They were among the first of a growing number of children and adolescents treated at Children's as children and adolescents that continue to be treated through their adult years.

Unique challenges

Treating these patients presents unique challenges, said Dr. Joseph Forbess, chief of Cardiothoracic Surgery at Children's.

"Adult healthcare facilities typically see very few patients with congenital heart disease, while children's hospitals don't see very many adults," said Forbess, who is also an associate professor of Surgery and Pediatrics and chairman of the Division of Pediatric Cardiothoracic Surgery at UT Southwestern Medical Center. "Because their numbers are going to increase steadily in the future, we have to be able to care for them optimally."

Dr. Forbess also holds the Pogue distinguished chair in pediatric cardiac surgery research at UT Southwestern.

Adults with congenital heart defects may have a variety of needs, including specialized treatment, testing and surgery, and they more than likely lack medical insurance. Each patient is evaluated on a case-by-case basis. "Their care is customized so that the strengths of the Heart Center at Children's can be offered," Forbess said.

If an adult patient has a significant number of co-morbidities (other unrelated medical conditions or illnesses) then he or she may receive care from UT Southwestern colleagues at University Hospital-St. Paul.

"A key component is to have the input of a doctor who routinely cares for adult patients while the patient is at Children's and pediatric cardiology and cardiac surgical input while they are at St. Paul," Forbess said.

Seth Dickey has recovered from his latest surgery at Children's and unrelated complications. Today, he’s back at work in Dallas and actively playing with his son Brayden. Seth comes back for regular check-ups with Dr. Lisa Forbess at Saint Paul University Hospital at UT Southwestern.

Seth Dickey

Dickey was born with coarctation of the aorta, a narrowing or blockage of the aorta between the upper body and lower body artery branches that can increase blood pressure in the arms and head, reduce pressure in the legs and seriously strain the heart. Aortic valve abnormalities often accompany coarctation.

He had open heart surgery in 1986, then again in 1991. That was followed by the Ross Procedure in 1995, which takes a child's own pulmonary valve and uses it to replace the defective aortic valve. The pulmonary valve is then replaced, most typically with a cadaveric human heart valve.

"I was really scared of having heart surgery. I didn't know what was going on. But when I got to Children's, I saw there were lots of kids being taken care of really well and that made me comfortable."

His Ross was a success, but another surgery was inevitable. By June 2007, his heart had outgrown the procedure and he underwent an aortic valve replacement with a mechanical valve. In addition, he received another cadaveric valve for his pulmonary artery.

Dickey has maintained a sense of humor about the hospital's colorful décor and patient items that are most often designed for small children — such as the pajamas he had to wear during a recent follow-up visit.

"They were about an inch-and-a-half too short," he said. "I'm the 'big kid' when I'm here."

Kyle Morgan

While Dickey has continued to have surgeries at Children's as an adult, Morgan completed his surgeries at the hospital as a child.

He was born with tetralogy of Fallot, a combination of four separate cardiovascular defects. Today, tetralogy of Fallot is repaired via open heart surgery either soon after birth or when the child is still an infant. In 1983, when Morgan was a baby, he first had a shunt inserted between his left subclavian artery and the left pulmonary artery, followed by open heart surgery when he was 2-1/2.

The last surgery was performed by Dr. Hisashi Nikaidoh, a staff member at Children's for 30 years, the former chief of Cardiac Surgery and a professor of Cardiothoracic Surgery at UT Southwestern. Nikaidoh pioneered a procedure in 1983 for fixing a trio of heart defects that now bears his name.

Children with tetralogy of Fallot must receive care from a cardiology specialist for their entire lives, including regular check-ups and some diagnostic procedures. Morgan still gets his follow-up care at Children's – which is convenient, since he now works at the hospital as a patient access representative in Ambulatory Pre-arrival Services.

"I wanted to see what it was like on the other side," Morgan said. "The experience of being in a place that strives to be more than just a hospital, but also one that improves a child's entire quality of life, it makes you feel like you're in a special place."

Now, if a parent is concerned about his or her child going to the hospital, Morgan is there to reassures them.

"I tell them I've been a patient here since I was really little," he said. "They take care of you."