A doctor’s lifelong quest to solve one of pediatrics’ greatest mysteries
At the Kawasaki Disease Clinic at Rady Children’s Hospital-San Diego, under the direction of Dr. Burns, the care of children affected by Kawasaki disease has always been linked to the search for the cause.
On a recent Wednesday morning, Dr. Kirsten Dummer, a pediatric cardiologist, reviewed the heart scans of a 2-year-old child who showed signs of a large aneurysm on the right side of the heart.
“The biggest question from parents is: how did this happen? How did my child get this? That’s what they fundamentally want to know in every patient room,” she said. “Year after year after year they come back and ask us, ‘Do you know anything yet?’”
Dr. Burns, who has continued to see patients herself, said these questions motivated her.
“If we were all PhD students in the lab looking at the etiology of Kawasaki disease,” it would be a different pace, said Dr. Burns. “But there’s an urgency to it, because we’re going back and forth, from the lab to the patients, saying, ‘Damn, I have to answer this question.’ It matters because it matters to these people.”
Later that morning, Inez Maldonado Diega, a four-year-old in a mermaid suit, rolled out balls of Play-Doh with her mother as Dr. Burns broke the news. Seventeen days earlier, the girl’s pediatrician had missed her case of Kawasaki disease. An echocardiogram had come back clear – a sign that her heart was healthy so far – but she still had a fever, meaning the illness could persist.
“I wish we’d seen her sooner,” Dr. Burns said, listening to Inez’s heartbeat. She requested genetic samples for her biobank from both Inez and her mother, explaining that children likely inherit a susceptibility to the disease from their parents.
Inez’s mother, Tiara Diega, assured Dr. Burns said she never had Kawasaki disease as a child – only scarlet fever. Dr. Burns raised her eyebrows and asked Ms. Diega to call her mother on speakerphone.
Had Mrs. Diega had bloodshot eyes during her infection all those years ago, she asked Mrs. Diega’s mother? Yes, said the mother. Dr. Burns exhaled slowly.
“That wasn’t scarlet fever,” she said.
The room was silent for a moment — Ms. Diega still held a stick of Play-Doh in the air — as the risks to both mother and daughter sank in. Then Dr. Burns Mrs. Diega for her own heart scan – to see if there was a serious danger looming all these years.