Claremore Daily Progress

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October 31, 2013

Kylie's Heart: Claremore toddler faces health struggle

CLAREMORE —

By all outward appearances, Kylie Casey is a healthy, normal, little girl.
Born in July, Kylie is the daughter of Claremore couple, Bryan and Tracey Casey, and the baby sister of Garrett.
Her color is good. She coos and laughs. She interacts with the other children her age at daycare. And,  she’s as wide-eyed and curious as any other baby her age.
But, appearances can be deceiving.
Although young, Kylie’s short life has been fraught with multiple health challenges, foremost of which is her eventual need of heart surgery.
Kylie’s mother Tracy said “Kylie was diagnosed in July with Heterotaxy Syndrome, which is a rare birth defect which involves the heart and other organs,” Casey said. “We’d taken (Kylie) in for a routine echocardiogram for a heart murmur that her pediatrician had heard at her one month check up. Within the first few minutes, I could tell something wasn’t right — just watching the lab technician’s face and reactions to what she was seeing, I knew something was seriously wrong.
“She immediately paged the cardiologist on call and then took us to ‘the room’ to explain everything that they saw,” she continued. “After additional tests, Kylie was diagnosed with Heterotaxy, which is so rare, it’s only found in one in four million births.”
As each case of Heterotaxy differs from another, the specifics in Kylie’s case weren’t encouraging.
“We were told that Kylie’s type (of Heterotaxy) included Levocardia, which meant that her heart was in the correct place, but her (abdominal) organs weren’t,” Tracy continued. “She was also found to have multiple birth defects, among them, congenital corrected transposition of the great arteries (CCTGA), Ebstein’s syndrome and anomalous pulmonary venous return — each of which would be hard enough to cope with and treat on their own, but to hear our baby had all of these conditions ...we were shocked ...heartbroken.”

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