Stories about: Frank Pigula

From Mexico to Boston to fix Regina’s heart

ReginaWindowFamilies throughout Mexico travel to the country’s capital for its world-class museums, ancient Aztec ruins, noted restaurants and hospitals. So for Elizabeth and Eduardo Torreblanca, flying 1,000 miles from their home in Cancun to deliver their firstborn in Mexico City was not unusual.

But when their baby was born with an unusual condition, the Torreblancas would have to travel much further to give her a chance at life.

Two days after Regina was born on November 20, 2010, an echocardiogram or “echo” revealed that she had hypoplastic left heart syndrome (HLHS), a serious and complex congenital heart defect that results in an underdeveloped left side of the heart. The hospital in Mexico City had limited experience with HLHS and gave the Torreblancas little hope. “The doctors told us that her condition is not compatible with life,” says Elizabeth.

Read Full Story | Leave a Comment

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.”

Read Full Story | 1 Comment | Leave a Comment