Stories about: HLHS

A prom to remember for two heart kids

prom photoIMG_5084 (2)Two kids went to prom together.

Not just any kids — heart kids.

Seventeen years ago, in 1999, Allie and Logan were roommates in the Boston Children’s Hospital Cardiac Intensive Care Unit (CICU), fighting for their lives against heart disease.

They were both undergoing the first two — of three each — open-heart surgeries.

Elizabeth (Logan’s mom) and Amy (Allie’s mom) spent every available moment at the bedside with their new babies — chatting about hearts, hospitals and life. Some days were more difficult than others, and there were setbacks for both kids.

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Meet Paz: Paraguay’s HLHS pioneer

Paz ballet 2Before Maria de la Paz was born, her parents Violeta Gustale and Orlando Cazal learned their unborn daughter had a complex congenital heart disease called hypoplastic left heart syndrome (HLHS).

With HLHS, the left side of the newborn’s heart is so underdeveloped that it cannot pump enough oxygenated blood throughout the body. The standard treatment is a series of three corrective surgeries to re-route blood flow through the heart. The first surgery is performed at birth, the second at six months and the third about two or three years later.

Violeta and Orlando were presented with four options:

  • Travel from their home in Paraguay to Boston Children’s Hospital for treatment. The Boston Children’s Heart Center had a 95 percent success rate for the surgeries Paz would need (this was in 2011; today, that rate is 97 percent).
  • Go to São Paulo, Brazil, where the best hospitals had a 75 percent success rate for the same surgeries.
  • Go to Buenos Aires, Argentina, where surgical success rates hovered around 50 percent.
  • Stay in Paraguay and have the surgeries there. Paz could be the country’s first success story, and the hospital would cover all medical expenses.

They made their decision right away. Their daughter would be born at Brigham and Women’s Hospital and treated at Boston Children’s.

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Vinny “The Conqueror” battles HLHS

Vinny #1 fan v2

My husband Mike and I will never forget the feeling of excitement we had the morning we were finding out if we were having a boy or a girl. It seemed like we had to wait an eternity, wondering whether we’d hear the words “it’s a boy” or “it’s a girl.”

Finally, the time came — and our nurse let us know we were expecting a BOY! After screeching from excitement and smiling from ear to ear, we quickly realized something was wrong.

Our doctor had noticed the left side of our son’s heart was noticeably smaller than the right, a sign that he had a condition called hypoplastic left heart syndrome, or HLHS. With HLHS, the left side of the heart is underdeveloped and unable to properly pump blood.

That day, our world immediately changed. Our minds were racing in every direction, and it seemed like we were literally living in a nightmare. We had plans of shopping for baby clothes and celebrating over a nice lunch, and instead we were meeting with doctors all afternoon and uncontrollably crying. It was this night we named our son “Vincent” (Vinny for short), which means “to conquer.”  We needed a strong name for a boy who needed to overcome so much.

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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.

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