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Seven-week-old Leo Webster’s heart was functioning at 20% capacity when he arrived at Le Bonheur Children’s via airplane from his home in Pennsylvania. Born with the rare heart condition Ebstein’s anomaly, a defect of the tricuspid valve, Leo was coming to see the one person who could save his life, Le Bonheur Chief of Cardiothoracic Surgery Christopher Knott-Craig, MD — an expert in neonates with Ebstein’s anomaly.  

“Leo was one of the sickest patients I’ve ever operated on,” said Knott-Craig. “The only thing keeping him alive was his mother, who watched him like a hawk. I’ve never not accepted a neonate with Ebstein’s anomaly, and I knew there was a really good chance that I could repair Leo’s heart defect.”

Leo’s mom Jessica knew something was wrong when her son was born. A nurse by training, Jessica advocated with her son’s physicians for an echocardiogram, which revealed a condition she had never heard of — Ebstein’s anomaly.  

“I went from the highest high of bringing a baby into the world to the lowest low of an unknown future for my baby,” said Jessica. 

Initially, Leo’s local physicians hoped the condition could be managed with outpatient monitoring and surgery later in life. However, after just two weeks, Leo’s heart function plummeted from 45% to 10%. The Websters found themselves back at the local children’s hospital.  

Leo’s physicians began consulting with heart programs around the country for a path forward, and Jessica continuously heard the words that are a parent’s worst fear: “There’s nothing we can do.” Expert pediatric cardiologists said Leo needed a complete heart transplant, but he wouldn’t survive long enough to get one. 

But Jessica kept pushing for more options for her son.

That’s when a leading pediatric cardiac surgeon in their hometown connected them with Knott-Craig, who has a history of good outcomes with Ebstein’s anomaly repair and a high caseload of patients with this diagnosis. After hearing Leo’s story and studying his heart condition, Knott-Craig said, “Send him to me, and I’ll find a way to fix his heart.”

“It was calming to know that there was hope and reassuring to know there was someone willing and knowledgeable enough to help our child,” said Jessica about meeting Knott-Craig. “And I have never had a surgeon sit down and talk to a family as much as he did.”  

Typically, in Ebstein’s anomaly, the right side of the heart doesn’t function, but the left side does and can support the right side. Knott-Craig determined that in Leo’s case neither side was functioning, because the left side of the heart had a large hole. His condition was further complicated by severe left ventricular noncompaction, which meant his left ventricle had not developed properly to pump blood. Surgery would need to rebuild both sides of Leo’s heart and close the hole for him to have a chance at full recovery.  

Le Bonheur’s surgical team, led by Knott-Craig, performed the complex Ebstein’s repair surgery. First, they successfully closed the hole on the left side of Leo’s heart with a mesh patch. Then Knott-Craig carefully restored as much function as possible to the right side of the heart through repair of the tricuspid valve and closure of the atrial septal defect. Leo had a speedy recovery and was discharged from the hospital less than two weeks after surgery.

“Not only did Leo progress faster than expected after surgery, but his heart has remodeled itself into a typical heart,” said Knott-Craig. “After six weeks, the left side of the heart began to see the benefit of the repairs and started remodeling and getting stronger.”  

Leo is now back home in Pennsylvania enjoying life as a happy and healthy baby. He will continue to be monitored by a cardiologist. His heart function is now in a normal range, and he no longer needs heart failure medications. While the Websters and Knott-Craig keep in touch on how Leo is growing, the family will most likely never need his surgical services again.  

“I hope that Leo knows how blessed he is to have had Dr. Knott-Craig in his life who saved and preserved his heart,” said Jessica.