Living with HLHS as an Adult: Kelly’s Story of Survival, Advocacy, and Hope
Kelly has spent her entire life overcoming the odds.
Born with hypoplastic left heart syndrome (HLHS), a complex congenital heart defect, Kelly was born blue and survived her first night despite an uncertain prognosis. Before she was four years old, she had already undergone three open-heart surgeries.
Today, Kelly is an adult, married to her husband, Mike, and together they have become passionate advocates for the HLHS community and HeartWorks. Kelly has never wanted her heart condition to define what her life could look like, but living with congenital heart disease has also meant learning to navigate limitations and uncertainty along the way.
Growing Up and Living with HLHS
For much of her life, Kelly says she tried to feel more “normal” than she actually did. She didn’t want to feel different or become a burden to the people around her. That fear even followed her into her relationship with Mike. When he first learned about her heart condition, Kelly tried to convince him not to date her because she worried about what an uncertain future could mean for him.
Mike saw things differently.
He fell in love with Kelly for who she was, and together they have continued building a full life while acknowledging the realities that come with her heart condition. Kelly exercises, travels, makes plans, and continues pushing herself to do the things she loves. As she explains, she has overcome the odds by refusing to let HLHS define her or stop her from living.
At the same time, living fully doesn’t mean pretending the limitations aren’t there.
Kelly’s heart continues to function well, but as she puts it, it is “working overtime all the time.” Everyday decisions can require considerations that most people never have to make, from how much she can lift to how much stamina she may have for a trip or activity.
When Childhood Survival Becomes Adult CHD
Kelly’s story represents an increasingly important part of the congenital heart disease conversation: what happens as children born with complex CHD grow into adults?
The surgeries Kelly underwent as a child gave her the opportunity to grow up and build a life, but they did not eliminate her congenital heart disease. Today, she and Mike are beginning to see signs of the long-term strain on her heart. Kelly shares that her heart is starting to enlarge and thicken and that she has a leaking valve, changes she describes as the “wear and tear” of a heart that has been working differently for decades.
Thinking too far into the future can be frightening, especially knowing that heart failure may eventually become part of the conversation. Kelly tries instead to stay present while continuing to advocate for a future in which people born with HLHS have more options.
That hope is a big part of why Kelly and Mike have become such strong advocates for HeartWorks and the work underway to change what may be possible for people living with congenital heart disease.
Imagining a Future Kelly Never Thought Possible
Near the end of their conversation, Mike asks Kelly a question that captures just how much the possibilities for CHD research have changed during her lifetime.
When she was a little girl, did she ever imagine there could be people working toward building new heart tissue for her using her own cells?
Kelly’s answer is simple: no.
For someone who was born with half a functioning heart and spent childhood focused on surviving the next surgery, the idea of scientists one day exploring ways to strengthen or rebuild heart muscle represents an entirely different way of thinking about the future.
Kelly and Mike’s advocacy is rooted in that possibility. Their story reminds us why advancing congenital heart disease research isn’t only about helping babies and children survive. It’s also about continuing to build better options for the adults those children become.
Kelly has already spent a lifetime overcoming the odds. Through their advocacy for HLHS and HeartWorks, she and Mike are helping push toward a future where the next generation of heart families may have even greater possibilities ahead.
FAQ Section
What is hypoplastic left heart syndrome (HLHS)?
HLHS is a complex congenital heart defect in which the left side of the heart is severely underdeveloped. Children born with HLHS typically require a series of surgeries early in life to create a new pathway for blood to circulate through the body.
Is HLHS cured after the three childhood heart surgeries?
The surgeries used to treat HLHS can be lifesaving, but they do not create a normal two-ventricle heart or eliminate the underlying congenital heart disease. As Kelly describes in her story, adults may continue to experience limitations and changes in heart function over time.
Why is research important for adults living with HLHS?
Children born with HLHS are growing up, which means research must look beyond childhood survival and toward long-term heart health. Kelly and Mike advocate for research that could create more options for people living with single-ventricle heart disease throughout their lives.
Could a person’s own cells someday be used to strengthen their heart?
This is one of the possibilities researchers are exploring. In Kelly and Mike’s conversation, they reflect on how unimaginable the idea of building new heart tissue from her own cells would have seemed when Kelly was a child.