Stephanos’ Story
Published on
In 2017, a routine prenatal anatomy scan revealed devastating news to Jen and her husband, Peter: their unborn baby had a congenital heart defect. They immediately reached out to doctors at the Children’s Hospital of Philadelphia (CHOP) Fetal Heart Program, who confirmed the diagnosis of hypoplastic left heart syndrome (HLHS), a defect in which the left side of the heart is underdeveloped and cannot effectively pump oxygen-rich blood to the rest of the body.
Because their son’s heart defect was diagnosed prenatally, Jen gave birth in CHOP’s Garbose Family Special Delivery Unit (SDU), which allowed newborn Stephanos to receive specialized care right away.
Just a few decades ago, children born with HLHS rarely survived past infancy. Now, the defect is addressed by rerouting the circulatory system with a course of three open-heart surgeries called “staged reconstruction.”
Stephanos had his first of three open-heart surgeries, the Norwood procedure, at only 7 days old. He went home after two weeks, with Jen and Peter reporting in on his weight, pulse-oxygen levels, and feeding him through a nasogastric (NG) tube that went up his nose and down into his stomach. The second surgery, called the Hemi-Fontan, happened at 5 months old. And Stephanos had the final procedure, the Fontan, when he was 3.
Stephanos’s road to recovery has not been without challenges. During pre-op checks before his second surgery, he went briefly into cardiac arrest. And after the third surgery, Stephanos was, inexplicably, unable to urinate for several months, requiring intervention from CHOP’s Division of Urology. And as with any kid healing from major heart surgeries, there’s always the worry that any sickness could further damage his heart.
Jen describes Stephanos, now 6 years old, as an “intense” and very athletic kid who’s obsessed with Legos and sports, his hometown Phillies and Eagles in particular. His hand-eye coordination is exceptional; he’s been swinging a golf club like a pro since he was 18 months old.
Jen says Stephanos doesn’t remember much about his time in the hospital. “He remembers the blue popsicles they gave him,” she says. “The scary memories are more on our end.”
Stephanos is one of many children with congenital heart disease (CHD) who, thanks to surgical innovations at CHOP and elsewhere, have the chance to age into adolescence and adulthood. What that looks like long term for patients like Stephanos is a history still being written. That’s why Jen believes that fundraising efforts like CHOP’s Philly Spin-In are critical to support future generations of children with CHD.
“My husband and I pray that Stephanos will outlive us,” Jen says. “The research funded by these events is going into finding an answer for these kids.”