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Kaylee's story


To see her today, toddler Kaylee is full of energy – a sight that conceals the life-threatening battles she faced in her first year of life.       

February 23, 2008, was the day of a winter storm and the day Kaylee’s parents, Kathy and Dustin, noticed that their daughter’s breathing patterns and skin color were anything but normal.  After calling 911, four ambulances started Kaylee’s journey to Geisinger’s Janet Weis Children’s Hospital, and Life Flight® -- about to be grounded because of the snow – agreed to take Kaylee the rest of the way.      

Seven-month-old Kaylee had experienced a heart attack.  She was diagnosed with supravalvular aortic stenosis, a rare heart deformity that limits the amount of blood passing through the aorta, and at times would make the blood flow to the coronary arteries insufficient. 

Only four days later, Kaylee was undergoing open-heart surgery for a procedure that typically comes with only a 25-percent chance for survival. Still, her parents – and Director of Pediatric Cardiac Surgery Kamal Pourmoghadam, MD – were hopeful. Afterward Kaylee was put into a chemically induced coma to allow her swollen heart to rest.

The youngster made an incredible recovery after waking up from her coma and went home from the hospital 11 days later without medication.  The recovery process wasn’t completely smooth, however. 

Based on Kaylee’s situation, Dr. Pourmoghadam – along with Janet Weis Children’s Hospital geneticist Bonnie A. Salbert, DO, and genetic counselor Molly Boni -- ordered  blood work to test for Williams syndrome.  It was a diagnosis that seemed likely given the rare heart problem as well as some of Kaylee’s physical characteristics, such as her constant smile and pixie-like features.  The discovery would mean Kaylee could experience problems with connective tissues as well as some physical and mental delays in development.

Kaylee was, indeed, a carrier of Williams syndrome.

Today, Kaylee is almost 3 years old.  To help combat the delays she may experience, she undergoes speech and physical therapy as well as occupational therapy – but nothing stops her from playing with her siblings, Colten and Jordyn, and dancing around a room.

 “She’s such a happy kid, there just isn’t much she doesn’t like,” Kathy says.

Children’s Miracle Network at Geisinger has funded cardiology equipment to aid patients during medical procedures as well as equipment for treatment use for patients such as Kaylee in the Pediatric Intensive Care Unit.  The organization also has funded comfort items that would have benefited Kaylee and her family, such as the televisions, DVD players and recliners that are in each inpatient room.