For the White family, life has been full of unexpected challenges—but also extraordinary resilience and hope. Three of Seth and Hannah’s children, Samuel, Selah, and Stephen, were all diagnosed with Ellis-Van Creveld Syndrome (EVC), a type of skeletal dysplasia that restricts cartilage and bone growth and is often accompanied by congenital heart defects. Their journey, which began with the birth of their first son, Samuel, has led them across the country to Nemours Children’s Hospital, Delaware, where they found the care they needed for their children’s complex condition.
The family’s story begins in Arkansas, where Samuel, now 6, was born. Hannah remembers the uncertainty surrounding Samuel’s diagnosis. “At our 20-week ultrasound, we learned that Samuel had some complex medical concerns, but even after a lot of testing, they weren’t sure of his exact diagnoses,” she said. It wasn’t until after Samuel’s birth that the family learned he had EVC, along with several other health challenges.
The news they received was devastating. Local doctors told the Whites there was nothing more they could do for Samuel, as his lungs weren’t strong enough to undergo the heart surgery he needed. But Hannah and her husband weren’t ready to give up. “I wasn’t willing to accept that answer without making sure it was the only option,” shares Hannah. Through a series of fortunate connections, they found Dr. Chowdhury, a specialist at Nemours Children’s with extensive experience in treating children with EVC. “Dr. Chowdhury said if we could get Samuel to Delaware then there was hope that Dr. Pizarro could give him the life-saving heart surgery he needed.”
In just a few days, Samuel was transported by medical flight to Delaware, where Dr. Pizarro performed the life-saving surgery that no one else had been willing to attempt. “Dr. Pizarro did what no other cardiac surgeon was willing to do, and successfully got Samuel through his heart surgery,” says Hannah. “Thanks to the skill and care of the entire cardiac team at Nemours, we were able to bring him home (with a trach and g-tube) when he was 8 months old.”
Four years later, their third child, Selah, was diagnosed with the same condition. This time, the Whites knew exactly where to go. Nemours had opened their Advanced Delivery Unit, allowing Selah to be born right at the hospital and immediately receive the care she needed. “Dr. Pizarro performed her heart surgery when she was just 3 days old,” Hannah said. “We were able to take her home after only three weeks.” Now 2 years old, Selah is full of energy, giving the biggest hugs and lighting up the room with her smile.
In October 2023, the family faced another hurdle when their youngest son, Stephen, was born with EVC. His heart defect was more severe than the others, and local doctors had little hope for his survival. Once again, the family turned to Nemours. Dr. Pizarro, alongside a dedicated cardiac team, was willing to operate on Stephen, and after several surgeries and procedures, Stephen is now 11 months old. Though still inpatient, Stephen is growing stronger every day, and his joyful spirit shines through, especially when his siblings come to play.
Alongside their cardiac care, the White children have also received extensive orthopedic treatment at Nemours. Samuel, now thriving at 6 years old, has undergone several surgeries to improve his mobility, including recent orthopedic surgery under Dr. Stuart Mackenzie. “Dr. Mackenzie is helping Samuel move more easily through a series of orthopedic surgeries,” Hannah explained. Selah, too, will likely need future orthopedic surgeries to ensure her continued mobility. Their expertise has been instrumental in Samuel’s progress, and the White family is grateful to have the support of the entire orthopedics team.
Looking back on their journey, Hannah reflects on the incredible care her children have received at Nemours. “The doctors and nurses here are truly one of a kind,” she says. “Without the expert knowledge of the care team at Nemours, 3 of our 4 children would not be here today.” She also emphasizes the sense of community Nemours has provided. Dr. Chowdhury connected them with other families facing the same challenges, giving them a support system they never expected.
While the road ahead for the White family still holds surgeries and medical treatments, they remain hopeful and grateful for each day. Samuel, now 6, continues to inspire with his curiosity, asking detailed questions about everything from defibrillators to elevators. 4-year-old Shiloh (who does not have EVC) is the sweetest helper for her siblings, and already says she wants to be a doctor or a therapist after spending so much time in the hospital with her siblings. Selah, their rambunctious 2-year-old, is as sweet as she is energetic. And Stephen, at just 11 months old, beams at everyone who enters his room, and is getting stronger and growing each day.
Hannah’s message to other parents facing similar journeys is, “Every day with your child is worth it! No matter how long or short the time, you will never regret fighting and advocating for your child. Every moment with your child is a memory you will have forever. Celebrate every small step as a milestone and know that you are not alone. Your child is a gift!”
