Kawasaki disease pediatric patient stories

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Duncan's story

What 4 1/2-year-old Duncan remembers about his eight-day stay at Boston Children's Hospital two years ago is that he ate a gummy worm, watched the movie Cars and met a dog. I remember everything else. And because I have a medical background, I unfortunately understood how sick he was at the time.

Kawasaki disease causes inflammation of many tissues of the body, including the hands, feet, whites of the eyes, mouth, lips and throat. But the aspect of Kawasaki disease we were most concerned about was its potential effect on Duncan’s heart and blood vessels.

What will always stand out in my mind is how Duncan's caregivers were able to make a terrifying situation not so terrible. Due to his "do everything the hard way" nature, Duncan became sick enough to end up in the Cardiac Intensive Care Unit (CICU) with an expert in this rare disease caring for him. He initially responded well to treatment, but by the third day, he had gained two pounds of fluid and was getting much worse.

Dr. Jane Newburger came to see him, along with several students, doctors, and members of the Kawasaki team. While examining Duncan and talking to me, she also took the time to teach, passing around her stethoscope to everyone in the room to listen to “the best medical student gallop you'll ever hear.”

That night, Duncan was moved to the CICU, had central and arterial lines placed, and was put on dopamine to improve the working of his heart. The many medications and other treatments he had there made a huge difference and I was soon taking him on rides in the go-kart, newly appreciative of how fortunate we both were. Several days and echocardiograms later, we were able to go home.

Kawasaki disease could easily have left Duncan with serious, life-long heart problems, but two years later, he is as happy and healthy as any other 4-year-old. I look back on our time at Boston Children's, if not exactly fondly, with an immeasurable amount of gratitude to those who cared for Duncan.

Thank you to those who enabled me to look beyond the rash, the fever, the endless medications and interventions, and made me believe that my baby would be totally fine. I never doubted that he was receiving the best care in the world. 

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

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