Diagnosed at birth with a rare combination of nongenetic abnormalities, Paxton was rushed to Rady Children’s within his first few hours of life.
At just 2 days old, he underwent the first of what now total more than 20 surgeries—aimed at giving him a chance at a healthy childhood and beyond.
Paxton needed open-heart surgery at 3 months old, and he and his family spent a significant portion of his infancy in Rady Children’s Neonatal Intensive Care Unit (NICU).
“We were completely overwhelmed—not only as new parents, but also as parents facing severe medical challenges for the first time,” says Paxton’s mom, Tara. “Most of the time, you hear about people having babies and going home, getting beautiful newborn photos and that’s the beginning of their story. That was just not our experience, and not the experience of many families we got to know at Rady Children’s.”
Tara and Paxton’s dad, William, found comfort in the care of neonatologist Marva Evans, MD, and the entire NICU team.
“The physicians always supported families in understanding and advocating for their child’s care,” says Tara. “Dr. Evans was a huge advocate for us and always there to answer our questions and keep us informed about what was going on.”
The family also relied on the compassionate expertise and support of cardiologist Serena Sah, MD, and Division Chief of Otolaryngology Matthew Brigger, MD, MPH, as they navigated unknowns within and outside of their specialties.
“Paxton has been under anesthetic more times than we can count and required the care of teams within more than five specialties at Rady Children’s,” says Tara. “Drs. Sah and Brigger have always been more than happy to make time for us and provide us guidance. They would even follow up afterward to make sure we had the care and resources we needed—and that we felt that Paxton was in a good place.”
Now, 5-year-old Paxton is able to enjoy his days running, playing and discovering just like any other child, though he will need continued care for the rest of his life. Tara says new awareness of his strength and resilience unfolds every day.
“We’re learning more and more as Paxton grows what he’s capable of, what medical advancements are out there. We’re learning with Rady Children’s as technology and medicine continue to evolve.”
Paxton’s favorite kind of day is one full of play—at a water park whenever possible. He hopes to become an engineer like his dad when he grows up.
His mom tells other parents facing medical complexities and uncertainties: “Never stop believing in your child. Never stop advocating for them. You’ll have more doctor visits, follow-ups and surgeries than other families, but your child can absolutely accomplish all the same things they could otherwise accomplish without medical challenges. If anything, it makes them stronger.”
Ranked the #1 pediatric heart program on the West Coast and among the top 3 in the nation for cardiology and heart surgery, Rady Children’s Heart Institute drives advancements in treatment for children facing cardiac disease. The Heart Institute team meets patients and families with open arms, providing holistic care fueled by the latest technology, techniques and research. Discoveries happening every day at the Heart Institute are furthering the lifesaving possibilities of the field and helping young patients lead healthier lives than ever before.
