Nathaniel’s heart: One for the record books

care for congenital heart defect

As 3-year-old Nathaniel Wesley nervously watched the big machine move toward his chest, he spotted a familiar face: It was the cartoon character Barney — in sticker form. “Give Barney a kiss!” his parents urged, and he smiled at the friendly purple dinosaur while the scanner took images of blood flow in his lungs.

Now 11, Nathaniel is no stranger to doctors, nurses or hospitals. Born with tetralogy of Fallot with pulmonary atresia — a severe congenital heart defect — he’s been a frequent visitor to the Heart Center at Boston Children’s Hospital for the past eight years. In this disorder, the heart and its valves and arteries develop abnormally, leading to a lower-than-normal amount of oxygen in the blood (cyanosis) and fatigue. Treatment typically includes cardiac catheterization and surgery.

pulmonary atresia

An unexpected path

His parents, William and Joseph Wesley, weren’t initially aware of the seriousness of his condition, however. The couple, who began fostering Nathaniel and his two older sisters in 2009, were told that the then-3-year-old boy would require just one more cardiac catheterization and “then he would be fine.” But when they brought him to an evaluation with Dr. Naomi Gauthier, a New Hampshire-based pediatric cardiologist who also practices at Boston Children’s, they were in for a shock.

“She told us Nathaniel’s case was much more complex than we realized,” explains Wil. “She said his is one for the record books.”

Although Wil and Joe originally hadn’t felt equipped to foster children with significant medical needs, their reservations went out the window as they got to know Nathaniel. “They say that a man makes his plans and God laughs,” says Wil. “We met our son and fell in love with him. We would never back out, no matter how ill he was.”

tetralogy of Fallot in young boy

Bonding in Boston

Gauthier and her colleagues in New Hampshire, where the Wesleys lived at the time, recommended they bring Nathaniel to Boston for treatment. Over the next several years, they made multiple trips to Boston, where he had 19 catheterizations and five open-heart surgeries, performed by the Heart Center’s Dr. John Mayer, Dr. David Brown and their colleagues. In between procedures, the couple formally adopted Nathaniel and his sisters; they have since adopted a fourth child.

While no parent wants their child to endure a chronic illness, the Wesleys say there’s a silver lining to be found. “Nathaniel had only been living in our home for a month when we went down to Boston Children’s for his first catheterization,” Wil remembers. “Foster and adopted kids often struggle to attach to their adoptive parents because of past trauma. In the hospital, Nathaniel had to rely on me for support and it was essential to our connecting with each other.”

tetralogy of fallot

Trusting their experience

There were other bright spots, too. The Wesleys credit the hospital’s Child Life Services team with keeping their son relaxed and engaged before and after surgeries. And because kids with congenital heart defects can face a variety of developmental and behavioral challenges, Nathaniel also visited the Boston Children’s Cardiac Neurodevelopmental Program, whose director, Dr. Janice Ware, worked with his school to help ensure he received necessary services.

“One of the things we like best about Boston Children’s is that the clinicians really listen to us,” says Wil, remembering how Nathaniel’s nurses took his suggestions for giving the little boy a shot. “They trusted me and my experience as a parent, even before I technically had those rights.”

congenital heart defect

Growing up

Today, Nathaniel is in what his physicians term a “surgical honeymoon” — he is doing well but will likely need at least one more surgery as he gets older. His prognosis today is much better than it would have been 15 or 20 years ago, due in part to advances in both the surgical and interventional catheterization techniques that were pioneered at Boston Children’s.

Smart and quick-witted, Nathaniel likes to dabble in activities ranging from soccer to karate to band, and even hammed it up on the runway at the recent Boston Go Red for Women Littlest Hearts Fashion Show. But his true love is baseball: This marks his fourth year playing the sport.

It’s a hobby that’s helped his fathers grow, too. “He’s medically fragile, but we’re trying not to treat him with kid gloves,” says Wil. “He’s fearless, and we want him to enjoy just being a child.”

Learn more about the Heart Center at Boston Children’s Hospital.