Stories about: Adult Congenital Heart Program at Boston Children’s

Gretchen’s story: A blue baby and living legend

hall family-4
Gretchen with husband Phil and son Josh

“I was very lucky to be born when I was,” says Gretchen Hall, talking about her congenital heart disease.

Born a “blue baby” in 1960, Gretchen’s parents were told that her chances of living very long were low. Her parents prayed she would be with them for a year.

Gretchen was born with cyanotic heart disease, the combined result of a number of different cardiac defects that ultimately cause low-blood oxygen level. (When babies aren’t getting enough oxygen, their skin appears blue, which is why they are called “blue babies”). In the 1960s, only a few hospitals in the U.S. were doing heart surgery on children born with congenital heart disease.

Shocked and afraid, her parents didn’t know where to turn. Joel and Ruth Hensel lived in rural Michigan, far from any medical center that could perform the complex surgery that might save Gretchen’s life.

After consulting with doctors near and far, they followed the recommendation of their family general practitioner who told them to go to Dr. Michael DeBakey, a surgeon experimenting with a number of cardiac procedures, in Houston, Texas. In the summer of 1964, Joel and Ruth left their two other young children at home and packed Gretchen, then 3, in the car for the long drive to Houston.

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Faces of adult congenital heart disease: Marathoner, mom, researcher

Spartan race 2Most people with congenital heart disease (CHD) are diagnosed at birth. But Dr. Kornelia “Nelly” Polyak found out about her condition in medical school.

After a lesson on cardiology, the teacher demonstrated an EKG on Nelly. Everyone was surprised by the abnormal result, and an echocardiogram confirmed that Nelly had CHD.

“I didn’t believe it at first. I was active, otherwise healthy, and felt fine — how could I have a heart problem,” says Nelly, who modestly describes herself as “more active than most people.”

Soon she learned she had an atrioventricular canal defect (ASVD), a hole in her heart that disrupted proper blood flow and also affected her mitral valve.

“It was pretty big,” says Nelly, “and I was warned my heart could fail before my 40th birthday if I didn’t have surgery.”

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How a mother’s battle with truncus arteriosus informed her daughter’s

Lauren and Kaylee

As a cardiac patient at Boston Children’s for the past 29 years, Lauren Hoey had learned to thrive in spite of her condition, but she never knew that she would be learning these coping skills in order to teach her daughter, Kaylee, the same skills and attitude.

When Lauren was just 18 hours old, she underwent her first heart surgery for truncus arteriosus, a rare congenital heart disease (CHD) that means only a single vessel arises from the heart. Normally, there are two separate vessels coming out of the heart. In 1983—the year Lauren was born—she stayed at Boston Children’s for more than one month. Most children who’ve had surgery for this condition recover and grow normally, although they are at risk for future arrhythmias, leaky valves and other heart complications. Also, like Lauren, these patients may require additional procedures before they reach adulthood.

Over the years, Lauren had three more cardiac surgeries and back surgery for scoliosis, and was fitted for two hearing aids. Twenty-five percent of babies born with congenital heart defects develop scoliosis. Yet, she didn’t allow these challenges to hold her back—succeeding as a competitive jazz and ballet dancer. She was an active member of the dance team during all four years at Westfield State College in Massachusetts.

“While I knew I couldn’t run up and down a soccer field, I found other sports in which I could participate and still enjoy,” Lauren says. “From the time I was a child, I had to be acutely aware of what I was capable of doing, but I didn’t allow the limitations to hold me back.”

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