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Holly Swanson | Congenital Heart Defect Awareness Week: My Son’s Story

by on February 13, 2013 6:21 AM

I usually don’t like to get too personal on these pages. I’d rather write about Penn State football or things that bother me or why I like living in State College. But my 9-year-old son has requested that I write about something that’s, pardon the pun, close to our hearts.

When I was pregnant with Ryan, we learned through a routine ultrasound that something wasn’t right. After seeing several specialists at Penn State Children’s Hospital, he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), which means that he has no left ventricle. In essence, he was born with only half of a functioning heart.

The left ventricle is the workhorse of the heart, pumping oxygen-rich blood out to the body. Aside from what we learned in high school biology, my family knew little about the heart at the time of Ryan’s diagnosis and we knew even less about congenital heart defects. We were told that the options for treating HLHS were limited and daunting. We had two choices: waiting for a transplant or relying on a series of risky open heart surgeries that would reroute his blood flow through the right side of his heart.

We were also presented with a third option — take Ryan home from the hospital after his birth and let him die. The best parents can hope for in an untreated HLHS infant is a few days, a week at the most.

So we had two options.

At the time, it was hard to consider how the situation could be anything but grim, but we were lucky. In many areas of the world, there are no treatment options. Even in some parts of this country, physicians recommend terminating the pregnancy because most facilities are unable to provide the necessary care. We were fortunate to live in an area that can not only treat HLHS but treat it well.

We chose the surgical option for many reasons. As harsh as it sounds, waiting for a heart, especially an infant heart, is a gamble. Many children die before they can get a transplant. We decided to work with Ryan’s own heart and chose the surgical route.

Ryan was born a few days before Christmas in 2003 and had his first surgery at five days. It was terrible, but he knew nothing of what was going on around him. His next surgeries at five and 28 months were worse because we also had to take care of his emotions and fears. His surgeries have allowed his heart to function with what amounts to a complicated plumbing system. It is not “fixed” and never will be, but it is in good shape.

Since then, he has had countless X-rays, heart catheterizations, ultrasounds and specialist visits. He takes six medications a day and has to be diligent about hand washing, since even a regular cold can land him in the hospital for IV fluids and monitors.

But he is also brilliant and funny. He loves Legos, Wii and science. He also wants more people to know about congenital heart defects (CHD) and is organizing a Wear Red fundraiser at his school on Valentine’s Day. The money he raises will help other CHD families with their medical costs.

CHDs vary wildly in their severity, from something as minor as a hole between the chambers to the more complex cases like HLHS. Though only small amount of research funds are allocated toward CHDs, they are the most common birth defect and affect one in every 100 babies.

Proper screening through prenatal tests like ultrasounds are important for detecting heart defects. In our case, early detection allowed us time to research our options, interview surgeons and meet other families with CHD children. Had we not known ahead of time, Ryan would have gone into heart failure soon after his birth. The chances of us getting him the right treatment quickly enough to prevent any permanent damage are slim.

Until recently, Ryan was hesitant to talk about his heart defect. He was never ashamed or embarrassed about it, but he just didn’t think people needed to know. As he has gotten older, though, I think he’s come to realize that everyone has something that makes them unique, even if that thing may initially be a burden. But he is maturing into a remarkable young man with the potential to do great things.

This is just the start.

To learn more about heart defects and the organization that Ryan is supporting, please visit Olivia’s Heart Fund.

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Holly Swanson is a State College-based freelance writer. She is on Twitter @statecollegemom and can be reached via email at
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