“We want him to run and fall like any other kid,” says Adreana Duchesne, describing her approach to raising her 4-year-old son Mason. Adreana and her husband Jeremy know that even though their son has complex congenital heart disease, his lifestyle doesn’t need to be limited in any way.
“Mason is super hyperactive. He’s a maniac, he’s fresh; he loves to sing and dance and put on a show. He has a personality the size of Texas.” He also has a scar the length of a ballpoint pen on his chest — the one visual reminder of his three open heart surgeries.
Adreana found out about Mason’s heart condition at her 20-week prenatal ultrasound near the family’s home in western Mass. “We were told to simply go home and grieve — that there was nothing we could do to save our son’s life. But we wouldn’t accept that.”
Planning, teamwork and resilience
In Boston, the anxious parents met Mason’s cardiologist, Lisa Bergersen, MD, and his surgeon, Ram Emani, MD. Adreana also had a fetal echocardiogram with Andrew Powell, MD, that yielded detailed diagnoses of heterotaxy syndrome, single ventricle, single atrioventricular valve, pulmonary valve stenosis and an unusual type of totally anomalous pulmonary venous return. While they were stunned, Adreana and Jeremy finally had some answers—and a plan. That day, the course of Mason’s life was forever changed.
Delivery was arranged at Boston’s Brigham and Women’s Hospital, because Mason was not likely to survive the trip from western Massachusetts if he was born close to home. He had his first open heart surgery at just one and a half days old.
“We were told there was a 1 percent chance he would make it through surgery without complications,” says Adreana, “So, Mason’s chest was left open for five days for monitoring, assuming something would go wrong. But nothing happened! He was incredibly strong and surprised everyone.”
In total, Mason has had seven cardiac interventions, including three open heart surgeries. He had his second surgery, a Glenn procedure, at four months. This surgery, and the Fontan procedure he had at 22 months, redirected blood flow straight to his lungs, bypassing his weakened ventricle. Once again, Mason surprised everyone with his resilience. “Not even 24 hours after the Fontan procedure, he was walking around the CICU asking for a grilled cheese sandwich and chocolate milk,” says Adreana.
Adreana says the team at Boston Children’s has been attentive to Mason’s individual needs. “It seems like everything they do is the right thing for him.”
“They care about the parents AND the child … you feel it from the second you walk through that door to the second you leave — and beyond. They even check on you when you’re at home.”
Adreana remembers looking around the cardiac floor at all of the children there battling different forms of heart disease and feeling overwhelmed by the strength of so many “little superheroes.” She has made a concerted effort to connect with other families in situations similar to hers and developed lasting friendships in the process.
“I feel like it’s really important to give back,” she says. “We are so grateful for the time we have had; every day is a gift. It’s a really powerful way to parent, and I hope that other families can learn to get to that point.”
Mason started his second year of pre-school last fall and keeps up with his peers without difficulty. He knows how to talk about his heart condition and shows off his scar proudly, but truly, he’d rather be playing with his brother and sister, who keep him on his toes.
“He’s always been incredibly strong and surprises everyone,” says Adreana. That remarkable resilience is one of the things that makes Mason the special person he is today — a bubbly little boy whose life is full of promise.
For more information about fetal cardiology and resources for expectant parents, visit bostonchildrens.org/fetalheart.