Molly and Ross Hussey thought the first few days following the birth of their second son would be a joyous and exciting time.
But when a nurse examining her newborn, Cooper, detected a heart murmur just hours after his birth, Molly’s care team scheduled an infant echocardiogram the following day. The test revealed that Cooper had a ventricular septal defect, a hole in the muscular wall that separates the two ventricles of the heart. The defect forces the heart to work harder to push blood out to the body, and can eventually cause heart failure, pulmonary hypertension or heart arrhythmia.
“It was devastating to hear that on day two,” Molly said. “Ordinarily, you just think you’re going to take your healthy baby home with you.”
Molly, who delivered at Fairview Southdale Hospital, was referred to Pediatric Cardiologist Jamie Lohr, MD, at University of Minnesota Masonic Children’s Hospital. Just a few days later the Hussey family met for a first appointment with Lohr.
Lohr, one member of the Pediatric Heart Center at Masonic Children’s Hospital, confirmed the diagnosis. In addition to the ventricular septal defect, scans also revealed that Cooper had a mild form of Tetralogy of Fallot, another congenital heart defect. But Lohr also gave the family its first dose of good news: Ventricular septal defects, or VSDs, are a relatively common type of congenital heart defect, and an infant’s outlook is often good following diagnosis.
Offering this kind of clarity to a patient or family is an important aspect of Lohr’s job.
“I make sure the diagnosis is accurate and then work with the family to make a short-term plan for the infant that’s safe for them,” Lohr said. “Because of the stress of a diagnosis, even medically savvy families will only remember a small percentage of what you tell them. That’s why I think carefully about the two or three most important things I want the family to remember from that first visit.”
Some VSDs close on their own during a baby’s development, though larger defects may need surgical repair. Cooper wasn’t in immediate risk from congestive heart failure, and any open-heart surgery would wait until he was older and larger. So Lohr prescribed several medications to minimize the risk of heart failure and help Cooper grow normally. Then, she and the Hussey family adopted a wait-and-see approach.
After three months and several more echocardiograms, it was clear that Cooper’s ventricular septal defect, 6 millimeters in size and centered underneath the heart’s aortic valve, wasn’t about to close on its own.
The family began prepping for open-heart surgery. Because of his worsening heart failure, Cooper had difficulty putting on weight and was often short of breath. To boost his nutrition levels, he was admitted for a five-day stay at Masonic Children’s Hospital, where he was given a nasal feeding tube.
On June 7, Cooper underwent open-heart surgery. Cooper’s surgeon, Pediatric Cardiothoracic Surgeon Anthony Azakie, MD, was himself a new arrival at Masonic Children’s Hospital.
During the surgery, Azakie successfully patched the hole in Cooper’s heart muscle. Nine days later, the five-month-old was back at home. Within a few weeks, he had gained two pounds. Cooper’s follow-up echocardiogram three weeks after the surgery revealed a healthy heart with no leak.
Molly, a physician assistant and medical professional, set a high bar for Cooper’s care in part because she is herself very familiar with hospital settings. Even so, she said Cooper’s care far exceeded her expectations.
“We had all-around, world-class care, from Dr. Azakie and Dr. Lohr to the nurse practitioners and physician assistants,” Molly said. “I wouldn’t wish it on anyone, but it’s the best experience we could have had.”