Tyler loves playing with Legos, cheering on the San Jose Sharks, and taking any opportunity to celebrate. And these days, the 7-year-old has a lot to celebrate.
In January, Tyler proudly became a big brother. But without Lucile Packard Children’s Hospital Stanford and the donors who support it, Tyler’s story would be very different. You see, Tyler was born with what amounted to half a heart.
“It’s a complete miracle that he’s alive,” says Gail Wright, MD, Tyler’s cardiologist and the Erin Hoffmann Medical Director for the Comprehensive Single Ventricle Program at Packard Children’s.
Tyler was born with a congenital heart defect called hypoplastic left heart syndrome—the left side of his heart did not form properly in utero.
The problem wasn’t discovered until after he was born in Santa Cruz, and he was immediately airlifted to our hospital.
“We had all the services he needed,” Wright said. “If he had been born further away, he might not have survived.”
During his lifetime, Tyler has undergone three open-heart surgeries, lengthy and frequent hospital stays, and more than 20 procedures total. Even a common cold from his classmates can land him in the hospital. And yet, he has not only survived but thrived.
Specialists across Packard Children’s have worked together with Tyler’s family to give him the best quality of life possible. Tyler also has epilepsy, autism, and mild cerebral palsy, meaning he needs a brace to walk. Over the years, through every challenge and every milestone, our hospital and donors like you have been there for him.
“When he was a newborn, we provided Tyler with the intensive care he needed to survive. As a 3-year-old, he benefited from an experimental drug trial. And now we do tight, impactful care coordination so he’s able to live at home, go to school—and be excited to have a new baby sister,” explains Wright.
Strength from Family-Centered Care
Ensuring families can be the best advocates for their children is a pillar of the Packard Children’s community. Wright works closely with Tyler’s mom, Jennie, and his pediatrician back home in Santa Cruz. Jennie’s experiences even inspired her to join Wright as part of the National Pediatric Cardiology Quality Improvement Collaborative to speak out on behalf of families like hers nationwide.
“We’ve tried to teach Tyler to have a really positive attitude,” Jennie says. Since he was 4, they have asked Tyler every day what his favorite part of the day was. “Even if we’re in the hospital we do this. It’s neat to hear what he thinks is the best part of his day. Sometimes it’s that a favorite nurse came to visit, or that someone was able to get a lab stick in one poke. It’s refreshing to hear from a little guy’s perspective what the best things are.”
“You’d be hard-pressed to find a more resilient family,” says Wright. “It’s very gratifying as a cardiologist to see him happy and alive. He had a lot stacked against him.”
Thanks to You
Your gifts to the Children’s Fund support essential resources like social workers, chaplains, interpreters, child life specialists, and many others who help families through the hardships of hospitalization, enabling them to focus on what matters most.
“Without your generosity and support in creating this spectacular hospital, our family, and so many others, would not have a place to call home,” Jennie says. “You have given us our son, and we are forever grateful.”
This article originally appeared in the Spring 2019 issue of the Children's Fund Update.
