Home Is Where Shirley’s Heart Expert Is
4.8.25 I Casey Egan
Eight years ago, Brianna and Joseph watched their baby, Shirley, rolling around inside Brianna’s belly during her 20-week ultrasound. They expected the appointment would be uneventful, but partway through, the stenographer fell silent. When she was finished, she told Brianna and Joseph that the doctor needed to talk to them.
“The first thing the doctor said was, ‘Your baby is beautiful, and they're going to do wonderful things with their life, but there's something wrong with their heart,’” Brianna remembers. “We started crying. We didn't know how to handle that.”
Brianna was referred to Seattle Children’s prenatal specialists, who diagnosed Shirley with truncus arteriosus, a rare congenital heart defect in which only one blood vessel forms (instead of the typical two) to carry blood away from the heart.
Infants with truncus arteriosus require surgery shortly after birth and ongoing medication. Seattle Children’s cardiology team, the most experienced pediatric cardiologists and heart surgeons in the Pacific Northwest, began planning Shirley’s care immediately.
Shirley was born on her due date in February of 2017 at the University of Washington Medical Center. Five hours later, she and Joseph were transferred to Seattle Children’s Hospital.
Once they arrived, Joseph was reassured by the staff’s confidence and kindness.
“The whole experience at Seattle Children’s was fantastic,” Joseph says. “Everyone I talked to – nurses, doctors, anesthesiologists, allergists – knew exactly what they were talking about. That gave us peace.”
Brianna adds, “The entire team cared so much about our little baby and made us feel supported in a situation that could have been so difficult.”
Seattle Children’s cardiac surgeons performed a successful open-heart surgery on Shirley when she was just five days old, placing a conduit to redirect her blood flow to the lungs and repairing a hole in her heart. Seattle Children’s surgeons perform over 500 heart surgeries each year, more than any other provider in the Pacific Northwest.
Shirley recovered from surgery in Seattle Children’s Cardiac Intensive Care Unit before the family was able to head home to Tacoma, Washington, about 33 miles south of Seattle. Shirley’s family quickly established care with Dr. Josiah Penalver, a pediatric cardiologist at Seattle Children’s South Sound Cardiology Clinic in Tacoma, which was a short drive from Shirley’s home. Driving to Seattle Children’s main campus would have taken an hour and a half.
“It’s such a relief to have Shirley’s heart team nearby,” says Brianna. “Seattle Children's South Sound Cardiology is like having Seattle Children's Hospital in Tacoma.”
Seattle Children's provides the highest-quality heart care closer to patients outside of Seattle, with 12 clinics across Washington State and 16 more throughout Alaska and Montana. Each location offers care in-person and via telemedicine.
The expertise provided at Seattle Children’s South Sound Cardiology Clinic is on par with the hospital campus, says Dr. Penalver. “We have all the resources of the hospital available to us.”
Since her surgery 8 years ago, Shirley has had check-ups with Dr. Penalver in Tacoma at least twice a year. Eventually, she will outgrow the conduit surgeons placed when she was a baby and will need another surgery to replace it with a larger one.
“It's been great having one cardiologist follow Shirley her whole life,” says Brianna. “Dr. Penalver knows exactly what her heart looked like when she was a newborn, what it looks like now. He will be able to let us know when she needs another surgery.”
Today, Shirley is an active eight-year-old. She loves to dance, read, and play piano. Her parents describe her as loving, sympathetic, and “a little firecracker.”
“With neonatal surgery, we hope patients go on to live healthy, full lives and do all the things that healthy kids do,” says Penalver. “And so far, that’s been true for Shirley.”
Brianna’s dreams for Shirley aren’t unlike those of parents with children who haven’t faced medical challenges. “My hope for Shirley is that she grows confidently into the woman she’s supposed to be and knows that we love her.”
Seattle Children’s has the only pediatric Heart Surgery and Heart Failure Programs in Western Washington. The team at Seattle Children’s Heart Center has more advanced training and experience caring for children with heart problems than any other children’s hospital in the Pacific Northwest.
Additionally, Seattle Children’s has been recognized as one of the top 10 best children’s hospitals in the U.S. and the best in the Pacific Northwest by U.S. News & World Report. For more than a decade, U.S. News & World Report has consistently ranked Seattle Children’s Heart Center among the top pediatric cardiology and heart surgery programs in the country.