Advanced Care for Tiny Hearts

Harper Heggland is seven years old, with a huge heart, a strong body, and a keen mind.  “I’m a tough chick,” Harper often says! Her mom, Megan, agrees. Megan describes her daughter as “a whip smart second grader, a reader, writer, mathematician, and athlete who rides her bike everywhere, practices taekwondo, and goes on five-mile hikes with the family. Nothing gets in her way.”

You could say Harper’s toughness was forged in the womb, while her heart grew imperfectly, something her mother knows a little bit about. Megan also has a congenital heart defect, and both mother and daughter have had surgery to repair their hearts. They are now followed by teams at Yale New Haven’s Heart and Vascular Center.

Megan’s childhood diagnosis

When Megan was four years old, she was diagnosed with an unusual heart defect known as primum atrial septal defect (ASD), a condition that results in a hole between two chambers of the heart. She also had a cleft, or partial separation, in her mitral valve.

As Megan grew, so did the hole in her heart, and by the time she reached seventh grade, surgical repair was necessary. Megan had surgery in 1997 at Yale New Haven Children’s Hospital. About a month later, she started eighth grade and with time was back to gym class and horseback riding. Today, Megan lives an active life as a full-time educator, caring for her family and enjoying the outdoors.

A second diagnosis

Given her history, Megan was monitored closely during her first pregnancy, and she gave birth to a healthy baby boy in 2016. Fifteen months later, pregnant for a second time, Megan and her husband John were surprised, but not stunned, when a routine ultrasound alarmed their obstetrician.

The couple turned to experts at Yale New Haven Children’s Hospital (YNHCH), where a fetal echocardiogram revealed an abnormality with their new baby’s heart. They met with pediatric cardiologist Dina Ferdman, MD, co-director of the Fetal Care Center and associate professor of Pediatrics at Yale School of Medicine. “I was really scared. I was afraid things weren’t going to go well, but Dr. Ferdman was so thorough in that first meeting,” Megan said. “She took me into her office, and she drew 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 than the one Megan had as a child. In this type of defect, all four chambers and both valves of the heart are impacted. Dr. Ferdman described “a hole right in the middle of the heart” and the atypical formation of a single valve, rather than the two separate valves found in a healthy heart.

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. She 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. There was a team of specialists in the operating room, ready to assist, but at nine pounds, Harper was one of the biggest babies in the Neonatal Intensive Care Unit. Despite her fragile heart, she was able to go home after just a few days. Megan and John were thrilled.

Within a few weeks, though, Harper began to show signs of heart failure. Her body was working hard to survive, and she stopped eating and began to lose weight. Even breathing became difficult. So, at five weeks old, Harper’s tiny heart was repaired surgically, marking the beginning of a long recovery.

After the surgery, Harper returned to YNHCH’s Pediatric Cardiac Intensive Care Unit for post-operative care. She was discharged about a week later and hasn’t been admitted again since.

It’s not been an easy road, and Harper survived many complications before her first birthday. Megan took leave from her job as a teacher to care for her daughter, which included learning to properly care for her feeding tube for eight months until it was removed. Through it all, Harper met every developmental milestone of a growing child—crawling, walking, and talking right on time. “She was a rock star at the hospital,” recalls Megan. “We formed such close bonds with the doctors there as they monitored Harper during our monthly visits.”

‘Everybody’s a team’

In 2022, Megan and her family moved to Norwich, Vermont for her husband to pursue a PhD in engineering, but they still make a yearly visit to YNHH to meet with their physicians. To maximize their trip, Megan and Harper’s care teams work together to ensure they can be seen on the same day. “Everybody’s a team,” Megan said. “The cardiology team 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.”

“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…but data suggests if you follow with a specialist, you can prevent or anticipate some of them.” Thanks to Dr. Elder, Megan was able to receive appropriate treatment for heart rhythm concerns she developed as an adult.

As for Harper, “I now see her once a year but she’s otherwise growing and thriving,” said Dr. Ferdman. “You would never know what Harper went through when she was a baby.” According to her mother, Harper is, and has always been, “a spitfire.”

Helping others with heart disease

The entire family practices giving back. Harper’s father’s goal as a biomedical engineer is to improve the advanced ultrasound technology used to diagnose and treat conditions like Harper’s. And recently, Harper raised more than $500 through a school challenge to “help other people and make heart disease better known.”

Megan’s message to anyone thinking about supporting Yale New Haven Hospital is twofold, “The cardiology team is so skilled, so knowledgeable. They need funding to continue their research to help people with congenital heart defects live long and healthy lives. The real question is why these defects develop. I’m convinced there are solutions; the experts just need resources to find them.” She goes on, “I hope our story is one of optimism. We made it through, but we didn’t always think we would. We’re very lucky we had such amazing doctors. For any family who has a baby with a serious diagnosis, please don’t give up hope!”

Thank you for listening to your heart and supporting this life-saving work.