John White, 21, of Birmingham, Alabama wasn’t supposed to live a normal life.
He was born with severe Ebstein’s anomaly, a congenital heart defect in which a malformation of the valve that separates the top and bottom right heart chambers results in disrupted blood flow through the heart.
“One of the main emotions that parents of kids with heart issues feel is grief over the thought that their child will never be ‘normal’ and be able to do what other kids can do,” said John’s father, Darin. “But John is living proof that, thanks in large part to the amazing people at Vanderbilt, that isn’t necessarily true.”
John’s medical records at Monroe Carell Jr. Children’s Hospital at Vanderbilt stretch back 20 years, when he first began seeing Ann Kavanaugh-McHugh, MD, professor of Pediatrics and Cardiology and director of the Fetal Cardiology Program at Monroe Carell. Kavanaugh-McHugh has been a central figure in John’s life: a medical provider whose specialized expertise and patient-first mentality put John on the path toward a relatively normal life.
John’s complex — yet cutting-edge — medical history
While John was active as a young child despite his heart difference, he was monitored closely, and his blood oxygen levels steadily continued to decrease over time. When he was 9 years old, John needed his first surgery.
At the time, the best approach to tricuspid valve repair was the cone procedure, then a relatively new approach to addressing Ebstein’s anomaly. The White family opted to take John to have surgery at the CS Mott Children’s Hospital at the University of Michigan where the surgical team was experienced with the procedure.
There, surgeons took tissue from John’s own heart and built a cone-shaped valve that would grow along with him and prevent blood from flowing in the wrong direction.
The valve worked well, but John found himself more limited in adulthood as his relatively small tricuspid valve and abnormal right ventricle struggled to accommodate the greater blood volume returning to his adult-sized heart.
After surgery, for the first time in his life, John achieved a blood oxygen level of 100% and his cardiac output was significantly increased.
John’s medical team at Monroe Carell sought to solve the problem through a procedure called a bidirectional Glenn. The procedure would reduce the blood volume load on the right side of John’s heart rather than replacing the valve that had performed well as John grew up. Carlos Mery, MD, MPH, chief of Pediatric Cardiac Surgery at Monroe Carell, performed the procedure in May.
“That’s where the brilliance of Dr. Kavanaugh-McHugh and the team at Vanderbilt really shines through,” Darin said. “Instead of replacing what was working, they came up with this incredibly creative solution.”
After surgery, for the first time in his life, John achieved a blood oxygen level of 100% and his cardiac output was significantly increased. The clinicians on his floor dubbed him “Rockstar John” because of his remarkable recovery; he was discharged just three days after the procedure.
“I worked hard to be as fit as I could before surgery to put my heart in the best condition possible to recover, and it’s paying off,” John said just days after surgery. “But the credit goes to Dr. Kavanaugh-McHugh, Dr. Mery and the entire surgical team. They say I’m going to feel like a new man.”
After caring for him for so long, Kavanaugh-McHugh has witnessed John grow comfortable with being a champion of his own health.
“John’s resilience is reflected in the way he has addressed all his challenges,” Kavanaugh-McHugh said. “He set the date for his surgery immediately after final exams to best be ready for his senior year of college and his wedding. John is nothing if not resilient. He is living fully in this moment, and he has always been that way.”
Thanks to the efforts of John’s medical team, his life story to date is not entirely defined by his cardiac difference. It’s defined by many things, but one thing is particularly important to John: soccer (see sidebar).
Immense gratitude
Throughout the process of caring for John’s condition, one constant has been his family’s gratitude for his cardiologist.
“Vanderbilt helped us escape the trap of fear, which is something many families with medically complex children experience,” Darin said. “When you have a child with a serious condition, it’s easy to let your fear shape how you parent. But John’s care team at Vanderbilt completely changed our perspective by showing us that we didn’t have to parent from a place of fear. Instead of telling us what John couldn’t do, they worked with us to find creative ways for him to do what he wanted to do.”
As an adult, John has come to appreciate the lack of stress about his condition more than he ever knew he would.
“That’s a great gift, psychologically, not to live with fear,” John said. “That’s a gift that goes beyond medicine.”
The Whites’ connection with Kavanaugh-McHugh runs even deeper than her 20 years of care for John. His brother Corey also spent time in her care for a heart condition of his own.
“Dr. Kavanaugh-McHugh is very personal, and she cares a lot about our family,” John said. “She has been with us through thick and thin, and she genuinely loves her patients.”
And as the White family grows, Kavanaugh-McHugh has seen to it that everyone is given the information they need to support and understand John’s condition. His new fiancé, Claire, spent an hour with Kavanaugh-McHugh during a recent visit to Monroe Carell as she explained John’s medical history.
“She knows that Claire is about to be his wife, and she realizes that she’s going to take over part of our role in caring for him,” Darin said. “It just blew me away that she would take the time to do that. Everybody at Vanderbilt goes the extra mile. So friendly, caring … It’s really a neat culture that we’ve experienced.”
That extra level of care is reflected in what Kavanaugh-McHugh had to say about her experience with the White family.
“Your relationship with each patient is different, but it is fun to interact with two children in the same family and be able to watch their interactions with each other as well. Families put their trust in us and invite us in to share their lives and their loved ones. It is a tremendous privilege.”
“World-class expertise and genuine personal care”
Recently, John wanted to take a road trip with some college friends, with one of the stops being a scenic hike far above sea level. The Whites decided it was worth checking in with John’s care team about exercising at high altitude — and they were right to have done so.
John was able to make the hike but only because his Vanderbilt care team arranged for him to receive an oxygenating device. When the device couldn’t be delivered to Birmingham in time for John’s departure, his medical team went the extra mile, locating a company that could ship the device directly to one of his planned stops in Nebraska, where John picked it up just in time for his adventure.
What we’ve discovered over the years is that we have an entire care team that’s not only medically excellent but also treats you like family.
“We originally came to Vanderbilt because Dr. Kavanaugh-McHugh was the pediatric cardiologist with the expertise John needed,” Darin said. “But what we’ve discovered over the years is that we have an entire care team that’s not only medically excellent but also treats you like family. That combination of world-class expertise and genuine personal care is rare — and it’s made all the difference for our family.”
“I’ve been told a lot that I’m an example,” John said. “It makes me want to push myself to do the kinds of things that you wouldn’t expect someone with a heart condition to do.”
