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At the Kawasaki Disease Clinic at Rady Children’s Hospital-San Diego, led by Dr. Burns, caring for children affected by Kawasaki disease is always linked to the search for the cause.
On a recent Wednesday morning, Dr. Kirsten Dummer, a pediatric cardiologist, was examining the heart scans of a 2-year-old 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? In every patient room, that’s what they fundamentally want to know,” she said. “Year after year after year, they come back and ask us, ‘Do you guys know more yet?’”
Dr. Burns, who has continued to see patients herself, said those inquiries motivated her.
“If we were all Ph.D.s in the laboratory working on the etiology of Kawasaki disease,” there would be a different pace to it, Dr. Burns said. “But there’s an urgency to it, because we’re going back and forth, from the lab to the patients, saying, ‘Damn it, I need to answer this question.’ It matters, because it matters to these people.”
Later that morning, Inez Maldonado Diega, a 4-year-old in a mermaid outfit, rolled out balls of Play-Doh with her mother as Dr. Burns broke the news. Seventeen days ago, the girl’s pediatrician’s office had missed her case of Kawasaki disease. A echocardiogram had come back clear — a sign that her heart was so far healthy — but she still had a fever, which meant the disease could be lingering.
“I wish we had 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 are believed to inherit a susceptibility to the disease from their parents.
Inez’s mother, Tiara Diega, assured Dr. Burns that she had never had Kawasaki disease as a child — just scarlet fever. Dr. Burns raised her eyebrows and asked Ms. Diega to phone her mother on speakerphone.
Had Ms. Diega had bloodshot eyes during her infection all those years ago, she asked Ms. Diega’s mother? Yes, the mother said. Dr. Burns exhaled slowly.
“That wasn’t scarlet fever,” she said.
For a moment, the room was quiet — Ms. Diega still holding a patty of Play-Doh in midair — as the risks to both mother and daughter sunk in. Then Dr. Burns referred Ms. Diega for a cardiac scan of her own — to see whether a grave danger had been brewing all these years.
Audio produced by Tally Abecassis.
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