Supporting healthier hearts

The Children’s National Heart Center is leading the way to find new and better treatments for cardiac problems as early as possible, during pregnancy and just after birth.

These critical stages are vital for a child’s lifelong heart health. “The innovations we are pursuing have the potential to transform the landscape of cardiac treatment,” says Wayne Franklin, M.D., F.A.C.C., Heart Center senior vice president.

“By focusing on the earliest stages of life, we can significantly alter the trajectory of children’s heart health, creating a lifetime of possibilities.”

Mending a Broken Heart

Abby, who just turned 1, is a smiley baby who loves to play peek-a-boo with her sister, Ruby. “We marvel that she is perfectly healthy,” says her father, Dan. He and wife Kelsey love to linger over ordinary moments. Her given name, Abigail, means “a father’s joy.”

When Kelsey was 18 weeks pregnant, she and Dan learned their baby had signs of heart injury, which led to a dangerous rhythm problem called “complete heart block.” The previous year, their infant son died from the same condition, which was discovered too late. The family prepared for another loss. But early detection of the problem and advanced care that started in the womb made all the difference for Abby. Children’s National prenatal cardiology experts began monitoring Abby’s development from the earliest possible moment and were able to intervene before devastating injury occurred.

Before Abby’s diagnosis, in light of the previous pregnancy, Kelsey enrolled in a clinical trial. The research sought a better way to identify and treat the heart condition Abby was at risk for. Anita Krishnan, M.D., a pediatric cardiologist and clinician scientist, met the family during their initial visit and arranged a monitoring plan that included frequent visits to make sure Abby’s heart was working normally. Soon after Kelsey’s first visit, doctors noted a problem.

Mary Donofrio, M.D., F.A.A.P., F.A.C.C., F.A.S.E., a leading pediatric and fetal cardiologist and The Van Metre Companies Professor of Fetal Cardiology, led the team that initiated lifesaving in utero therapy, followed Abby’s progress in the womb and planned for her arrival. The goal was to extend the pregnancy for as long as possible so she would survive birth and the heart surgery that would follow.

Abby’s prognosis improved as weeks passed. As a newborn, she would be a candidate for an infant pacemaker the size of a penny. It would help regulate her heartbeat and enable her to live a “normal” life.

Kelsey and Dan met with Charles Berul, M.D., emeritus chief of Cardiology and The Van Metre Companies Professor of Cardiology, and his team. There was uncertainty about whether Abby’s heart was too damaged for the pacemaker to work, but Dr. Berul, who has spent decades refining designs for this type of device, expressed confidence. Abby would be the world’s 27th infant, and the fifth at Children’s National, to have one implanted.

“To have him say, ‘We’ve developed this device, we know what we’re doing, all of the other babies who have had this are doing well and we’ll be right here in the room with you,’ was pretty incredible,” Dan says.

Kelsey’s monitoring in the clinical trial and the innovative therapy that started before birth likely helped Abby survive until she was born at 32 weeks at MedStar Washington Hospital Center. Dr. Donofrio and the Children’s National care team were in the delivery room and rushed Abby to our Cardiac Intensive Care Unit. Dr. Donofrio arranged for mom and daughter to pass in the hall on the way. “I heard her cry and felt relief for the first time,” Kelsey says.

Abby’s pacemaker enabled her heart to beat properly on its own. She soon moved to our Neonatal Intensive Care Unit. In two months, she went home with her family. Kelsey and Dan monitor her pacemaker with a handheld device that sends reports to her team at the hospital.

“We’re lucky to have doctors nearby who are at the forefront of this lifesaving research. Children’s National took care of us with a great deal of humanity. Now we can focus on being a family,” says Dan.

Read more stories like this one in the latest issue of Believe magazine.