A LITTLE BOY WITH A BIG HEART
A series of three open-heart surgeries saved Thelo Smoot.
Excerpted from the Spring 2018 Duke Children's Stories, from an article written by Aliza Inbari
Thelo was born with hypoplastic left heart syndrome, a rare congenital heart defect in which the left side of the heart is severely underdeveloped and cannot pump oxygen-rich blood to the body properly. According to the Centers for Disease Control and Prevention, about one out of every 4,344 babies in the U.S. is born with this syndrome.
In August 2017, he underwent his third open-heart surgery to improve his cardiac function at Duke Children’s. “Before the surgery, only half of his blood was oxygenated, and that compromised his ability to run and play,” says Lori Smoot, Thelo’s mom.
“A year ago, I would not have imagined him playing in the playground for that long. After 15 minutes he would have been done. The surgery has helped him have more oxygen, muscle, strength, and balance.” - Lori Smoot, Thelo’s mother
HEARTBREAK IN SOUTHEAST ASIA
In 2012, Smoot and her husband were living in Dehradun, India with their three children. Shortly after becoming pregnant with their fourth child, Thelo, he was diagnosed with narrow aorta—the major artery that carries blood to the body. The doctor recommended terminating the pregnancy. “It was a heartbreaking way to learn how serious my son’s heart disease was.”
The Smoots did not give up. They returned to the U.S. and came to Duke for comprehensive care and further evaluation. It was here that Thelo was diagnosed with a variant of hypoplastic left heart syndrome. When he was born prematurely in the 36th week, Thelo’s heart was far from perfect. Just nine days after he was born, he underwent the first of three open-heart surgeries.
HOPES FOR THE FUTURE
When he was four months old, Thelo underwent a second surgery, called a bidirectional Glenn, to redirect blood flow to his lungs. But at 16 months old Thelo had colds constantly, struggled to maintain his body temperature, and experienced heart failure. Thelo and his mom were flown by medical transport to Duke just after his second birthday, and he was listed for a heart transplant.
His third open-heart surgery was successful, and together with changes in his nutrition, he feels better now and currently does not need a new heart. “We know that over time his ventricle could get weaker and he could end up needing a heart transplant, but we are hoping that if that ever happens, it will be decades down the road,” says M. Jay Campbell, MD. “He is doing well, and we are hoping that he lives a long and happy life.”
“We performed the Norwood procedure to reconstruct a new aorta that will allow blood flow to his body. Without the surgery he would not have survived.”
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