When Dale Robertson visits St. Louis Children’s Hospital, everyone from the Heart Center greets him warmly.
It’s no wonder, since he was one of their more memorable patients.
In 2019, Robertson came to Children’s for a rare, combined heart and liver transplant – when he was 42.
He was referred to Children’s because of the team’s nationally recognized expertise and long experience in treating complex congenital heart disease (CHD) and performing organ transplants.
Tulsa-native Robertson, who was born with a rare CHD, was among the first generation of patients to receive newly developed lifesaving CHD surgical procedures. Previously, patients seldom lived past childhood.
But as more patients like Robertson live longer, doctors have had to chart new treatment paths for the problems that arise when the initial repairs wear out. In Robertson’s case, that meant transplant surgery in a children’s hospital.
Initially nervous about being the oldest, if not largest, patient treated in the Children’s Heart Center, Robertson soon found that there’s no age limit on receiving complex and compassionate care.
Born with a broken heart
Robertson was born with double inlet left ventricle syndrome, a condition that prevented his heart from pumping blood effectively.
In 1983, he underwent a groundbreaking procedure offered at the Mayo Clinic to reroute the blood flow through his heart. The surgery improved and extended his life — but no one know how long it would last.
Growing up in Tulsa, Robertson was able to do almost everything he wanted to (except play football). He attended school, got a job, married, had two sons and spent as much time as he could outdoors.
Choosing St. Louis
In 2015, weak spells and breathlessness sent Robertson to his Tulsa cardiologist. Robertson’s heart had begun to fail.
The nearest heart teams with the necessary expertise to treat a complex case like his were in Houston or St. Louis. Robertson chose the Washington University team at Barnes-Jewish and Children’s hospitals for his care.
He initially was evaluated at Barnes-Jewish Hospital — the adult hospital affiliated with Washington University physicians. Cardiologists there said he’d eventually need a heart transplant but didn’t meet the criteria to be added to the waiting list, yet.
His transplant, they said, would need to be done by a congenital-specialty-trained cardiothoracic surgeon who operates on children and adults. Pirooz Eghtesady, MD, PhD, director of cardiothoracic surgery at St. Louis Children’s Hospital, Washington University surgeon is not only a renowned congenital heart disease surgeon, but also performs cardiothoracic transplants.
So, it was decided that Robertson would be admitted to Children’s when the time came for him to be listed for a donor heart.
In the meantime, he was able to return home to continue working eight-hour days.
“I’m tougher than a 50-cent steak,” Robertson says. “You just can’t give up, or it’s all over.”
A procedure done in September 2017 to improve his heart function had to be reversed after fluid began building up in his lungs.
In February 2018, fluid began building up in his abdomen. Doctors found Robertson’s failing heart had damaged his liver. To make his case even more complex, he’d also need a liver transplant.
Over the next several months, the Children’s and Barnes-Jewish heart and abdominal transplant teams worked together to plan Robertson’s surgery.
In early 2019, Robertson came to St. Louis for a week of testing.
Finally, on April 3, 2019, he was admitted to Children’s seventh floor and put on the list for a donor heart and liver. Now, all he had to do was wait.
Checking into Children’s
For about a week, Robertson stayed in his hospital room, nervous about how other patients, their parents and even staff might accept an adult patient. But once he ventured out, young patients began calling out greetings.
Parents of patients in the Children’s Heart Center were especially glad to talk to Robertson. Many had questions about his condition, but others were simply happy to see a CHD patient who had not only reached adulthood, but also had lived a full life.
“I guess I gave them hope,” Robertson says.
He got to know the care teams, housekeepers, cardiac cath lab team and cafeteria staff. “The grill guys started my breakfast as soon as I walked in,” he says. “They knew my regular order.”
As he did at home, Robertson was outside as much as possible – in the seventh-floor roof garden or the eighth-floor Olsen Garden. In bad weather, he’d find some other way to occupy himself.
“I have some great memories of Dale’s stay,” says Children’s Heart Center patient care operations coordinator Kathy Jo Stallard. “He was so kind and generous. He was always helping me. He always had a smile on his face and was a friend to everyone.”
On May 22, 2019, the call came that a heart and liver was available. Dr. Eghtesady and Children’s liver transplant director and Washington University surgeon Majella Doyle, MD, successfully transplanted a heart and liver simultaneously from the same donor into Robertson’s body in a 13-hour surgery.
He awoke from the surgery sore with an incision that stretched from his upper chest to lower abdomen. He also felt a strange sensation – warmth – the result of his donor heart pumping fully oxygenated blood through his body.
“I never got hot and sweaty before,” Robertson says.
Robertson recovered quickly with no major complications or rejection. After six months, he was home and back at work, more active than ever.
He returns to St. Louis for regular follow-ups, although most are at an adult BJC facility, and the pandemic has kept him from catching up with staff at Children’s recently.
But he is gratified, not just that he survived his ordeal, but that he was able to add to the medical knowledge about adults with CHD, give hope to the parents of young CHD patients and connect with the staff at Children’s.
“It turns out, I kind of enjoyed being here,” he says. “It’s just a great staff on all levels.”