Three-year-old Finn stands in front of the full-length mirror in his parents’ room, with his shirt off. “Mommy, look how cool!” he shouts, placing his finger along the long scar running down the middle of his chest. “That’s where I had my heart surgeries!”
“That’s right, buddy,” Jenna replies, surprised because they’d never talked about his scars. “We always tell him he has a special heart. We don’t ever want him to feel different.”
Finn runs off to play.
It makes Jenna smile and sometimes cry to see her son so happy and full of life. Now 5 years old, Finn has had three open-heart surgeries to treat multiple complex congenital heart defects, and his journey is not over. “We are so thankful to Boston Children’s Hospital for giving our child life,” says Jenna. “Each day is a blessing.” …
Marissa Waite lives in the smallest town in Massachusetts, but she has a big story to tell. When her mother Vicky was pregnant with Marissa 13 years ago, an ultrasound detected esophageal atresia (EA), a condition where the esophagus isn’t connected to the stomach.
Vicky was admitted to Brigham and Women’s Hospital for the remainder of her pregnancy. “I’m a take-charge kind of person. When I was pregnant, I thought, ‘I’ll make all the decisions for my baby.’ But when complications arose, I realized I couldn’t make these kinds of decisions alone,” she says.
According to Christian legend, St. George saved the mystical town of Silene—along with a lovely princess—by slaying a dragon that plagued the city. As his namesake, William St. George Hunter (“George”), a 1-year-old heart patient at Boston Children’s Hospital, has shown a similar type of courage and spirit.
George’s battle against his heart condition began before he was born. At 25 weeks of pregnancy, his mother, Elisabeth Hunter, flew to Boston Children’s from South Carolina to undergo a fetal intervention with Wayne Tworetzky, MD, co-director of the Advanced Fetal Care Center and director of fetal cardiac imaging. George was born at Brigham & Women’s and went home with his family after several weeks of observation at Boston Children’s. But the Hunter family returned when George was five weeks old for the physicians to temporarily insert a balloon catheter in his aortic valve, a procedure called balloon valvuloplasty that seeks to dilate a narrowed valve.
“His condition improved after the balloon procedure,” says Elisabeth, “but we knew the treatment was unsustainable.” …
How do you know if you’re making the right medical decision for your child?
Nine years ago, Rosamaria Rand and her family faced this difficult question. While pregnant, Rosamaria learned that her daughter, Alexa, had a severe heart defect known as hypoplastic left heart syndrome (HLHS), where half the heart fails to develop properly. Doctors told the Rands that most children born with HLHS go through a process known as single ventricle palliation or “SVP”— a series of three surgeries to reconstruct the heart so it can function with a single working ventricle. They also let the Rands know that only about 50 percent of patients treated this way survive to adulthood.
Alexa had her initial procedure in utero (before she was born) at Boston Children’s. At this time, her parents learned about an alternative treatment method to SVP that can help patients with HLHS. Under development at Boston Children’s, this relatively new approach held the promise of helping children born with HLHS avoid long-term complications and improve their overall health. …