Stafford County, VA seven-year-old Kayleigh Williams has a resilient heart: one that’s survived complications, surgeries, diseases and other big challenges with a fighting spirit. Before she was born, her mother, Carine, learned at her 20-week ultrasound that Kayleigh had hypoplastic right heart syndrome. At the time, the family was based in Jacksonville, NC, where Kayleigh’s father, Chris Williams, was stationed as a member of the United States Marine Corps, with the closest hospital more than a two-hour-drive away. Carine did extensive research on Kayleigh’s condition and the family was approved for a relocation to a new army base in the DC area closer to a hospital where Kayleigh could be treated and closer to family.
Kayleigh was born with Tricuspid Atresia, Pulmonary Valve Stenosis, an Atrial Septal Defect and Ventricular Septal Defect, intestinal disease and a brain aneurysm. She had just enough oxygen to fend off needing immediate surgery, but after two months, her oxygen levels fell and it became clear her heart couldn’t keep up with her growing body. She had a fairly quick succession of four surgeries over her first two years – starting at just 12 weeks old – to repair her heart and intestines. In the years since, she has had six more surgeries to treat intestinal disease.
Today, Kayleigh’s heart and oxygen levels have stabilized. She’s careful about not overexerting herself with physical activity and staying hydrated, but she’s happy and thriving at school. Kayleigh, her parents and her 10-year-old brother, Kolbe, are on a mission to raise awareness about her story and offer hope. This includes explaining her heart and intestinal condition to both classmates and adults and creating community with families experiencing similar challenges.
Throughout Kayleigh’s health journey, Carine remains positive: “Kids like Kayleigh are strong; you just have to give them a chance. It’s amazing what developments in science have done to improve survival rates for kids with ventricle defects – Kayleigh didn’t just survive, she’s flourishing – and she’s learning how her health challenges are her unique strengths.”
With Kayleigh’s heart, stomach and brain conditions, she’ll need careful monitoring for years to come. And as she grows, her parents keep the conversation going, helping her understand her health needs.
In the coming school year, Kayleigh will enter second grade as a Virginia Youth Heart Ambassador for the American Heart Association, telling her story at schools’ “Kids Heart Challenge” kickoff assemblies across the region, building community with fellow heart warriors and allies across the east coast and raising awareness and funds to advance science and research to treat special hearts like hers.
“Kayleigh already knows how to advocate for herself,” said Carine. “Through the Kids Heart Challenge, she’ll get to use her voice even more to inspire kids and parents alike so that they can take their heart health seriously and feel hopeful about a future where congenital heart defect warriors like Kayleigh can thrive.”
Learn more about Kids Heart Challenge and how you can bring the program to your school here.