Stories about: HLHS

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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Life with HLHS: Keeping up with Lucas

Baird-boys-3By Rebekah McGowan

When we first learned that our son would be born with Hypoplastic Left Heart Syndrome, we were devastated. But once the shock had worn off we were desperate to talk to other families who had been through the experience. We asked our doctor about support groups, but he was less than impressed with what was available.

“They’re out there, but it’s mostly propaganda,” he said, scrolling through a Google search of HLHS communities. “Regardless of what you may read, these kids can’t run and they can’t do sports.”

And while he wasn’t impressed with what Google had to say about the future of kids with HLHS, he was impressed with what Boston Children’s Hospital’s Heart Center could do for children with the condition—and I’m so glad he was. Through his referral we went to Boston, and there we found the hope we needed. It was there that we learned that our son had a good chance of having an extraordinary quality of life under their care. We were also told that other than contact sports, our son could do anything he wanted to.

Over the years Lucas continued to thrive. And for each year he got stronger we participated in the NSTAR walk for Boston Children’s Hospital. It’s our way to say thank you to the hospital that saved him, and to help fund additional research, particularly in the areas of congenital heart defects that affect 1 in 100 babies born every year.

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Determined to overcome HLHS

Peter-Dunn-3 Kerri Dunn can always tell when her son Peter is determined to do something because when he gets deeply focused his face scrunches up and he squints one eye tightly shut, which his mother says makes him look like a cute, 2-year-old version of Popeye.

It’s a face Kerri sees a lot, because Peter is a very determined little boy. The youngest of six children, Peter is always trying to keep up with his older brothers and sisters—or “my kids” as he calls them. And, despite his smaller size, he still manages to do so—whether they’re walking, running or even climbing trees.

While his determination to keep pace with his older siblings may seem cute on the surface, it’s actually an incredible testament to Peter’s strong will. Not only is he managing to follow in their much larger footsteps, he’s doing so with only fifty percent of a working heart beating inside his chest.

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