Our Patients. Their Stories. Madison Berry

Madison Berry

There’s just no way I could thank my parents enough for being there for me.

Madison Berry, Bedford, NH

For as long as she can remember, Madison Berry, 13, of Bedford, New Hampshire, has been an athlete, whether performing on the ice as a figure skater or crouching behind the plate as catcher for her softball team.

And for many of Madison’s early years, little could stop her from running the bases at full speed or performing on ice -- not even her heart murmur held her back.

When Madison was three, her pediatrician in northern Vermont—where she and her family lived at the time—first noticed the heart murmur, which is the sound blood makes as it moves through the heart. Most childhood heart murmurs are normal and do not require any medical treatment. Madison’s mother Courtney Berry recalls, “We decided at that time it was not very significant. We were going to watch it. And every year she had her well-child check, it was still there, still noticeable and getting louder.”

At the age of seven, Madison’s pediatrician referred her to the first of several important health care team members at the Children’s Hospital at Dartmouth-Hitchcock (CHaD). Under the care of Michael Flanagan, MD, in Pediatric Cardiology at CHaD in Lebanon, Madison underwent the first of many specialized cardiac tests, including an electrocardiogram (EKG) which detects irregularities in the heart’s rhythm and an echocardiogram or ultrasound to see how well blood flows through it.

Flanagan diagnosed Madison with subvalvular aortic stenosis, a rare heart defect in which a narrowing of the left ventricle obstructs the flow of blood as it exits the heart. The narrowing was mild at first, but the family was cautioned that it might worsen over time. “At that point, it was not restrictive to Madison. She could still play sports. So we decided to just continue yearly checks to see how things went.” Courtney says.

When Madison and her family moved to New Hampshire in 2015, she continued her care with Flanagan at CHaD in Manchester.

At a routine checkup in February 2016 , Flanagan noticed a change in Madison’s condition. The degree of narrowing below her aortic valve had worsened. The blockage was increasing to a point that it would not be safe for her to continue being as active as she was without repairing the defect.

“That’s when we decided to take some action and go ahead with surgery,” Courtney says.

Madison would be facing open heart surgery at the age of 12. The surgery would involve removal of tissue build-up just below the aortic valve that was constricting blood flow. Pediatric open heart surgery is a highly specialized field of medicine, and there are no pediatric heart surgeons in all of New Hampshire or Vermont, so Madison needed to be referred to Boston Children’s Hospital.

On August 2, 2016, waking up from open-heart surgery, and after a difficult removal of her breathing tube, Courtney recalls, “The first question when Madison opened her eyes was, ‘Where’s Dad?’ (He had gone home.) And the second question was, ‘Did the Red Sox win?’”

So eager to get back on the field and back to figure skating, Madison spent only 72 hours in post-operative recovery before leaving the hospital, despite being told to expect to stay there for more than a week. “I set a record,” Madison says.

Certainly there have been difficult periods through Madison’s recovery. It was in those times that the family was held up by her health care team. Courtney, who is a registered nurse and currently a care coordination manager for Benevera Health at D-H, is grateful for the advice and support of her colleague, Karen Scott, a technical supervisor in Pediatric Cardiology at CHaD in Manchester. Scott helped calm Courtney’s and Madison’s nerves about going into the surgery. “In a whirlwind of wondering what was going to happen next,” Courtney says, “Karen was my rock.”

During recovery in the Cardiac Intensive Care Unit at Boston Children’s Madison met the next member of her cardiac team, David Crowley, MD, another CHaD pediatric cardiologist. Crowley works full time at CHaD and knew Madison’s mother Courtney through work. Crowley also works part time at Boston Children’s performing cardiac ultrasound imaging in the operating rooms. When Crowley recognized her name on the hospital census, he visited her in the ICU to check on how she was doing after surgery.

“He knew how much it would mean for us to see a familiar face while we were in Boston,” Courtney says. “He didn’t need to say anything. Just seeing him made all the difference to both of us.” Madison later transferred her care full time to Dr. Crowley.

For several weeks, she needed to heal and very gradually reintroduce activity into her life and Crowley tried to make it easier for her. “Dr. Crowley found out that she loved softball,” says Courtney, “so he would find a way to incorporate softball into each of her follow-up appointments.”

He began with allowing her just to hold the softball, then to toss it to her mother. “He knew that it was how to relate to Madison in a way that she could connect with and that she would understand,” Courtney says. “He’s always at her level, knows where she’s coming from, how to explain her conditions and what she should do, all in a way she can understand.”

“I love Dr. Crowley,” says Madison. “He’s the best.”

After surgery and a long recovery, Madison’s heart goes out to her parents. “Having to see my parents go through that,” she says, “there’s just no way I could thank them enough for being there for me.”