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Hopeful and Grateful: One Family Living with Pediatric Heart Disease

Jaylie Sawyer is a bright and joyful 7-year-old who loves animals, enjoys math and is proving to be a natural on skis. She also is living with pulmonary vein stenosis (PVS), a rare condition in which the veins that carry blood from the lungs back to the heart continually narrow and scar. The cause of PVS is unknown and patients require multiple interventions over many years, including cardiac catheterization procedures to restore blood flow to the heart.

For her healthy life and closely monitored heart, thanks go to her devoted and determined parents, Jessica and Daniel, and to her physician, Henri Justino, MD, a pediatric cardiologist and pioneer in PVS care who joined Rady Children’s Dickinson Image-Guided Intervention Center in 2021 from Texas Children’s Hospital, in the Sawyers’ home state.

“Our daughter has beaten the odds by being a 7-year-old with PVS,” Daniel says.

Jaylie’s PVS was caught earlier than is typical. That’s because her parents tragically lost their son, Jude, to the disease when he was just 11 months old. Knowing the family risk, they had Jaylie tested within days of birth, and within weeks she was undergoing catheterization with Dr. Justino. Since then she’s had more than a dozen procedures. Her parents say she is brave and confident at the hospital, since these visits have become routine.

Many young children aren’t diagnosed with PVS until they are gravely ill. Left untreated, PVS may be fatal. But survival odds are steadily improving thanks to newer treatments. Dr. Justino has brought innovations to the field, including use of a stent that releases a drug to help keep the vein open longer.

“Cardiologists tried all sorts of operations to open up the veins in PVS patients, but pulmonary veins are unique and sensitive, and there was previously a lot of pessimism about the disease,” Dr. Justino says. “I’m on the more optimistic side. We’ve been able to make strides in the field by being persistent and working in partnership with families.”

When Dr. Justino left Texas to join Rady Children’s, the Sawyers initially weren’t sure what it meant for Jaylie’s care. “Dr. Justino is humble, kind and not afraid of a challenge,” Jessica says. “He’s on the cutting edge of saving kids’ lives. We knew we needed to go wherever he was practicing.”

The family did just that in January 2022, flying to San Diego for Jaylie’s procedure at Rady Children’s new Dickinson Image-Guided Intervention Center. The Dickinson Center is designed to make cardiac care safer and less invasive for pediatric patients, and features the most advanced catheterization/MRI combination suite in the country.

Dr. Justino recalls that, after her Rady Children’s visit, Jaylie was excited to go see the sea lions in La Jolla.

“This little girl has been an enormous personal inspiration, exemplifying that we can achieve tremendous successes when we work steadfastly together to serve our patients and their families,” he says. “ We have a lot to learn, including a possible genetic factor that could one day lead to a screening test. I want to continue innovating here, creating a center for excellence for PVS. I know I’m in the right place. The culture of support and excellence is strong at Rady Children’s and the Dickinson Center.”

“Everybody at Rady Children’s has been welcoming, kind and supportive,” Daniel says. “Dr. Justino is the best cath doctor in the world, hands down. I’m glad he’s taken his skills to Rady Children’s. We look forward to seeing how the PVS team flourishes and saves more babies’ lives under Dr. Justino’s guidance.”

The Sawyers also give families living with PVS hope and help through an active Facebook page they launched to offer supportive advice and resources. “We know that knowledge is power,” Jessica says. “Through this group we help people learn about disease and be a true advocate for their child.”

Because Jaylie is doing so well, her family has also undertaken a new adventure: Jessica, a oncology radiation therapist, is working with a traveling health care company that’s sending her to work in various clinics across the country. They’re currently in Montana, where Daniel is homeschooling Jaylie and her two older brothers, and the family is enjoying lots of time together.

“Jaylie has been a champ. She really rolls with punches,” Daniel says. “Her veins are healthy now. Looking at her running around you’d never know she is a heart patient. We’re so lucky. We’re grateful for every day.”