Newspaper article The Florida Times Union

Woman Raises Awareness of 'Blue Baby' Adult Health

Newspaper article The Florida Times Union

Woman Raises Awareness of 'Blue Baby' Adult Health

Article excerpt


Kyra Ray of Mandarin was once considered a "miracle baby."

Born in 1970 with a congenital heart defect called tetrology of fallot (once commonly referred to as "blue baby" syndrome), she was 4 when she underwent open-heart surgery at Mount Sinai Hospital in New York.

One of millions of blue babies who have been helped by the wonders of modern medical science, Ray was the picture of health when she reached adulthood.

However, like many whose congenital heart defects were surgically repaired in childhood, when Ray outgrew the pediatric cardiologists who had followed her progress, she went on with life unaware that her "repaired" heart was failing.

When she began experiencing alarming symptoms in her early 20s, doctors attributed it to anxiety attacks.

"Even the very best adult cardiologists missed it," said Ray, describing visit after visit to doctors who found her chest pain, shortness of breath, severe episodes of arrhythmia and fatigue to be "unremarkable."

Ray began to research the Internet for answers to her continuing symptoms.

"When I found the Adult Congenital Heart Association web site, it saved my life," she said, noting that ACHA was started in 1988 by other congenital heart defect survivors who faced many of the same challenges.

Twenty-eight years after her original surgery, Ray, by then a mother of one daughter, was diagnosed with severe pulmonary insufficiency and returned to Mount Sinai to undergo emergency heart-valve replacement surgery in 2002.

Later that same year, she underwent further corrective surgery at Mayo Clinic Jacksonville by surgeon Octavio Pajaro.

"What I learned from Kyra is that a brand new specialty is emerging to address the unique challenges of adults with congenital heart disease," said Pajaro. "This is a new niche in medicine brought about by medical advances made 40 years ago."

Some challenges Ray has faced are the insurance barriers and costs of travel to ACHA centers of excellence - places identified by the American College of Cardiology's 32nd Bethesda Conference in 2000 that meet guidelines that all congenital heart disease survivors should be treated by cardiologists specializing in adult congenital heart disease. …

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