Kael Adams was diagnosed with a rare, complex congenital heart disorder in utero and had his first heart surgery at 8 days old. After more than 20 surgeries and procedures and a lifetime of care of Vanderbilt, Kael, now 15, is keeping up with his friends in baseball and playing without restrictions.
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Fifteen-year old Kael Adams has experienced more in life than most his age – he’s served as an honorary player for the Nashville Sounds, sat on the bench with Nashville Predators players during the NHL All-Star Weekend in Nashville, and met countless celebrities.
He also lived his first five years in and out of Monroe Carell Jr. Children’s Hospital at Vanderbilt, enduring three open heart surgeries and countless other procedures that saved his life.
Kael was born with a rare heart malformation known as Taussig-Bing Anomaly. With this condition, both the pulmonary artery and aorta connect to the right ventricle, and a large hole exists below the pulmonary artery.
the search for the best care
Mom Kara learned of the defect when she was five months pregnant and living in Hawaii. “Many children with this have four separate heart defects, and Kael actually has six,” she said. “Pregnancy was scary for the remainder because we knew this was waiting for us upon his birth.”
The hospital in Hawaii was not prepared to care for Kael, so after researching options, the family chose Vanderbilt for more advanced specialty care. Nashville was also closer to family. Kael was born in February 2004, just weeks after the freestanding Children’s Hospital opened. He underwent his first open-heart surgery when he was 8 days old, and was one of the first babies in the new Neonatal Intensive Care Unit.
“His heart was the size of a grape, and someone was operating on it. There is such a small, select group of pediatric thoracic surgeons that are able to do this type of surgery,” Kara said. “And we were very fortunate that Vanderbilt has one of them.”
Kael underwent a second open-heart surgery at 5-months-old, and spent his 10th birthday recovering from a third. In between, he’s had multiple cardiac catheterizations and countless other procedures to ensure his heart functions well.
Kael feels at home in Children’s Hospital – he’s grown up there and is “never afraid to walk through those doors,” Kara said. “I was scared for the third open-heart surgery and Kael just said, ‘I’m ready.’”
It’s a very fitting response considering Kael’s name means “Mighty Warrior” in Gaelic.
Love of the game
Like many teenage boys, Kael grew up with a love of sports. He wanted to play football and hockey, but couldn’t. “The two roughest sports were the ones he wanted to play,” Kara said with a laugh. He was able to play soccer, basketball and baseball, with restrictions.
All those surgeries, procedures and time in the hospital prepared Kael for a visit with his cardiologist, Ann Kavanaugh-McHugh, in late summer of 2015. After undergoing his third open heart surgery in January of that year, Kael was told he could play without restrictions.
“That, for us, because I know what it meant to my son, changed everything,” Kara said. Kael could play baseball – his favorite sport – without restrictions.
Kavanaugh-McHugh delivered more great news at a checkup in 2017 that made Kara tear up and Kael smile.
“On your treadmill today: Awesome. When we look at your heart on the ultrasound, it squeezes beautifully,” the cardiologist said. “Your heart looks terrific. So, I’m hoping that you never need surgery again.”
"We are all fighting for the same reason and that is that my child gets to live a long healthy life."
Kavanaugh-McHugh was just as excited at the news. She has been caring for Kael his entire life, and has a special bond with Kael’s family.
“You have to care deeply about the people that you take care of. You have to understand them, you have to know what they need,” she said. “You make a promise to them; that our team is going to bring everything we have because we want them living life.”
Monroe Carell Jr. Children’s Hospital at Vanderbilt “is more than world-class doctors, it’s the relationships that you build inside those walls,” Kara said. “You see the passion they have; it’s not just a job for them. It is a love. We are all fighting for the same reason and that is that my child gets to live a long healthy life.
“Kael is the greatest gift we’ve ever received. We’re very fortunate because we experienced a miracle and continue to experience a miracle.”