Looking at 7-year-old Harper Heggland, you would have no idea that she has congenital heart disease. Her mom Megan Heggland describes Harper as a “little spitfire” who has the perfect comeback to every question and now takes Taekwondo.
“She is a little fighter, from the very beginning of her being,” Megan said.
She would know a thing or two about being a fighter. Megan also has congenital heart disease, and both mother and daughter have had surgery to repair their hearts. Now they both receive care at Yale New Haven Health’s Heart and Vascular Center.
A diagnosis in childhood
Growing up in Redding, Connecticut, Megan was diagnosed with an unusual form of atrial septal defect (ASD) known as a primum ASD at 4-years-old. ASD is a congenital heart defect that results in a hole between two chambers of the heart. She also had cleft, or partial separation, in her mitral valve.
As Megan grew, so did the hole and by the time she reached 7th grade, it was time for surgical repair. Megan had her surgery in 1997 at Yale New Haven Children’s Hospital. About a month later, she was able to start 8th grade and with time was back to gym class and horseback riding.
A second diagnosis
At 30, Megan had her son, and while she was monitored throughout pregnancy, she had no issues. It was a different experience when she got pregnant with Harper 15 months later.
A 20-week fetal echocardiogram revealed an abnormality with her daughter’s heart. She decided to get a second opinion and met with Yale Medicine pediatric cardiologist Dina Ferdman, MD, co-director of Yale New Haven Children’s Hospital’s Fetal Care Center and associate professor of Pediatrics at Yale School of Medicine.
“I was really scared. I was afraid that things weren’t going to go well, but she was so thorough in that first meeting,” Megan said. “She took me into her office, and she drew me a picture of what Harper’s heart looked like and explained all the parts to me. She reassured me.”
Harper had an atrioventricular canal defect (AVCD), a more severe defect that is similar to the same condition Megan had as a child.
“There are four chambers of the heart, and there's typically a wall that separates the two sides of the heart. When you have a canal defect, you have a hole right in the middle of the heart, such that there's an opening between the upper chambers as well as between the lower chambers,” said Dr. Ferdman. “In addition, the atrial ventricular valves that connect to the upper and the lower chambers don't form correctly, meaning there's only one single valve within the heart rather than two separate valves.”
Harper would need surgery early on in infancy. Leading up to Harper’s birth, Megan was monitored closely by the Maternal Fetal Medicine team, as well as Dr. Ferdman.
Megan also received a referral to see Robert Elder, MD, director of the Adult Congenital Heart Program at Yale New Haven Health’s Heart and Vascular Center and associate professor of Pediatrics at Yale School of Medicine. Like many adult patients with congenital heart disease, Megan did not have a cardiologist specializing in congenital heart disease. Now Dr. Elder oversees her care.
Harper’s arrival
On April 23, 2018, Megan gave birth to Harper during a scheduled C-section. Megan says there was a whole team of doctors in the operating room, ready to assist Harper in whatever way was needed. Harper spent a short time in the Neonatal Intensive Care Unit for monitoring before the family was able to go home.
But just a few weeks later, Harper was struggling to gain weight, and it was determined she would need surgery right away. After surgery, Harper returned to Yale New Haven Children's Hospital’s Pediatric Cardiac Intensive Care Unit for post operative care.
“I tried to just engross myself in learning all about what these doctors and nurses were doing,” said Megan. “Educating myself on all the medical pieces of Harper’s heart helped me better understand what was going on.”
About a week later Harper went home and has not been admitted to the hospital since.
“I see her once a year but she’s otherwise growing and thriving,” said Dr. Ferdman. “You would never know what she went through when she was a baby.”
‘Everybody’s a team’
In 2022, Megan and her family moved to Norwich, Vermont, but they still make a yearly visit to Yale New Haven Hospital to meet with their care team.
“We have this saying in our field that repaired is not cured,” said Dr. Elder. “Patients with congenital heart disease are at increased risk of complications, heart rhythm problems, heart valve problems and there is data that suggests if you follow with a specialist in this area, you can prevent or anticipate some of those complications. So, I think finding a specialist who knows about their unique congenital heart disease is important.”
For example, Megan has needed care for heart rhythm concerns she developed as an adult. Because she is seen by a specialist, she has been able to get the appropriate treatment.
To make their yearly trip work, Megan and Harper’s care team work together to make sure they can be seen at the same time on the same day.
“Everybody’s a team,” Megan said. “The cardiology team at Yale is just so personable. They’re flexible, they’re knowledgeable and they care. It says a lot that we travel three hours each way to stay with a team of doctors.”
Learn more about adult and pediatric care for congenital heart disease at Yale New Haven Health’s Heart and Vascular Center, and Yale New Haven Children’s Heart Center.
