After surgeries to treat HLHS, Carter is healthy and happy at home in Florida

Carter Miller loves action. The 4-year-old Florida resident enjoys riding on golf carts and flying high on swing sets. 

It’s the kind of fun that make his parents, Andrea and Bo, appreciate where the family is now. Nearly five years ago, they were worried after a prenatal diagnosis showed Carter would be born with a life-threatening heart condition. But their anxieties eased after they traveled far for the first of many trips to Boston Children’s. They quickly realized it was the only place they wanted to be for prenatal care and extensive surgeries that followed because of the hospital’s expertise in treating newborns with complex heart defects.

“We did everything we could to get him the best treatment in the world,” Andrea says. “We came looking for an answer and his care team gave it to us. The answer was he’s going to be okay.”

An assuring diagnosis at a time of concern

An ultrasound 20 weeks into Andrea’s pregnancy showed that Carter had hypoplastic left heart syndrome (HLHS). It’s a congenital heart defect (CHD) that prevents the structures of the heart’s left side from developing, affecting the pumping of oxygen-rich blood throughout the body. It is life-threatening if not treated immediately after birth. “Bo and I were terrified,” Andrea recalls. 

Living in Georgia at the time and dissatisfied with a lack of local treatment options, Andrea and Bo wanted to find a heart center that had experience treating HLHS. The Millers got advice from a friend who once worked for Boston Children’s. “She said, ‘You’re going there. They know what this is.’” The friend reached out on behalf of the family, and soon Andrea got a call from the hospital’s Fetal Cardiology Program. “They called on a Friday and asked if I could be there Monday. I didn’t hesitate.”

Before meeting with the program’s director, cardiologist Dr. Wayne Tworetzky, Andrea’s mindset was “Carter wasn’t going to make it. When I mentioned that to Dr. Tworetzky, he assured me everything would be okay.” Dr. Tworetzky explained that cardiac surgeries in the first few years of Carter’s life would allow his heart to function properly. 

He also explained that his team — which is part of Boston Children’s Fetal Care and Surgery Center (FCSC), a leader in prenatal and neonatal treatment — would closely monitor Carter’s development while still in the womb. Cardiac surgeon Dr. Aditya “AK” Kaza‘s team would also monitor Carter to effectively plan his first surgery soon after birth.

‘The Beast of Boston’ came through after three surgeries

Andrea and Bo came to Boston 36 weeks into her pregnancy. Although nervous as her due date approached, Andrea was determined to give birth in Boston, instead of a hospital back home, because it ensured Carter would soon have treatment as part of a careful and safe transition handled by specialists working together. The support she received from the Fetal Cardiology Program and FCSC, including how the staff arranged housing close to Boston Children’s for her family, put her at ease. “Everything was handled so well,” she recalls. “We were blown away by the experience.” 

Soon after Carter was born at a local hospital, Dr. Kaza had good news. Carter looked strong enough to immediately have the first of three single-ventricle surgeries that would let his healthy right ventricle do the work normally performed by two ventricles. 

Some patients stay in the hospital between the first and second surgeries to recover, but Carter was healthy enough after the first procedure to fly home in a matter of weeks. The same thing happened after the second surgery five months later and after the third procedure two years later: Carter and family were on a plane ride home to Florida sooner than anticipated each time. “It was pretty amazing from where we first were,” Andrea says. “We call him the Beast of Boston, coming through the way he did.”

Carter always has the ‘best attitude’

Seeing Carter have several heart surgeries as an infant was often emotionally challenging for Andrea and Bo, but their care team always made the family feel comfortable and confident. 

“The first three years of Carter’s life were hard, especially in the first six months, because he had two open heart surgeries,” Andrea says. “But today, looking back, it was absolutely worth it. I would tell any parent whose child has HLHS or any other complex condition, their child deserves that chance. Boston Children’s works with you. They will make it happen.”

Carter still comes to Boston Children’s but also sees a local cardiologist recommended by Dr. Tworetzky. He’s part of a specialized education program at pre-kindergarten and is always smiling. “It’s almost like he knows he got a second chance at life because he is the happiest kid,” Andrea says. “He’s so easy to please and thinks life is great. He has the best attitude.”

Carter especially enjoys playing with the family’s dog, Maverick. “His favorite thing is to throw the ball and watch the puppy bring it back,” Andrea says. “He almost falls over laughing. He thinks it’s just the funniest thing the world.”

Learn more about the Fetal Cardiology Program and Fetal Care and Surgery Center.