Local family shares son’s CHD journey as awareness week begins
ESTERO, Fla., Feb. 3, 2026 — During Congenital Heart Disease (CHD) Week, February 7–14, the American Heart Association, devoted to changing the future to a world of healthier lives for all, is urging families to learn the signs, risks and ongoing needs of children born with heart defects — a condition many outgrow only through lifelong care.
An estimated 2.4 million children and adults in the U.S. are living with congenital heart disease. Advances in research have helped reduce death rates by nearly 37.5% since 1999; however, congenital heart defects still require complex care, and about 1 in 4 babies born with a CHD has a critical defect that will require surgery or another intervention in the first year of life.
For the Hooks family of Southwest Florida, those statistics became personal.
Eight-year-old Sawyer Hooks has undergone more heart procedures than most adults will face in a lifetime. During a routine prenatal ultrasound in 2017, doctors noticed an abnormality in his heart. Further testing led to a diagnosis of tetralogy of Fallot, a congenital heart defect that can severely limit blood flow to the lungs.
Born a few weeks early, Sawyer struggled to breathe and turned blue during “Tet spells” caused by low oxygen levels in his blood. At just 10 days old, he was airlifted to Nicklaus Children’s Hospital in Miami. Surgeons performed a full heart repair when he was 16 days old, placing nearly 200 stitches in his tiny heart.
Sawyer thrived for several years but began to tire easily by age six. Tests showed tissue around his heart valve had become narrowed, meaning he needed a second surgery. After two postponed attempts — one due to an emergency case and another because of illness, Sawyer finally underwent successful valve replacement surgery. He was walking the next day.
“Congenital heart disease is something no family expects, but early diagnosis and ongoing care can change a child’s entire future,” said Eric Eason, M.D., pediatric cardiologist, Lee Health. “Thanks to advances in surgery, imaging and long‑term follow-up, children with CHD are not only surviving — they’re growing, learning and thriving. Sawyer’s story is a powerful reminder that with specialized care and community support, these kids can live full, active lives.”
Today, Sawyer proudly wears his scar and inspires others as “Super Sawyer.” He attends annual cardiology appointments and hopes to join the Kids Heart Challenge at Edison Park Elementary, which is a service-learning program that gives students a meaningful opportunity to give back to their communities while developing valuable leadership and life skills. It’s a way for students to better their lives, all while changing someone else’s.
“You never expect your child to go through something like this,” his father, Robert, said. “But Sawyer has shown us what real strength looks like. Our community, his medical team and a lot of faith carried us through.”
The American Heart Association and the Children’s Heart Foundation co-fund the Congenital Heart Defect Research Awards, which support scientists working to better understand, diagnose and treat CHD.
“Stories like Sawyer’s remind us why continued research matters,” said Jessaca Rodriguez, executive director of development and community health, American Heart Association, SW Florida. “Today, children with congenital heart defects are not only surviving — they’re thriving. But their lifelong care depends on ongoing medical advances and community support.”
For more information on CHD resources and local programs, visit heart.org.
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About the American Heart Association
The American Heart Association is a relentless force for a world of longer, healthier lives. Dedicated to ensuring equitable health in all communities, the organization has been a leading source of health information for more than one hundred years. Supported by more than 35 million volunteers globally, we fund groundbreaking research, advocate for the public’s health, and provide critical resources to save and improve lives affected by cardiovascular disease and stroke. By driving breakthroughs and implementing proven solutions in science, policy, and care, we work tirelessly to advance health and transform lives every day. Connect with us on heart.org, Facebook, X or by calling 1-800-AHA-USA1.
For Media Inquiries:
Janeth Castrejon: janeth.castrejon@heart.org
heart.org and stroke.org
