Home Monitoring for Babies with Heart Disease

As a pediatric heart surgeon and research scientist, Danielle Gottlieb Sen has long felt the need for a simple, noninvasive monitoring device that babies with congenital heart disease could wear — the way their parents might wear a smartwatch — to track how well their heart is functioning when they go home between surgeries.

“It’s called the interstage period, and there’s a pretty high risk of mortality,” says Gottlieb Sen. “And we know the risk is higher in groups affected by health disparities — things like ethnicity, income and geographical distance from a heart center, which we call social determinants of health. As a surgeon, I felt I would see patients come back in better shape if I had a way to monitor them remotely.”

But it wasn’t until she joined the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center in April 2020 that Gottlieb Sen was able to start making serious progress toward realizing her vision. “Because of the strength of the Hopkins engineering program, I found real partners to work on the technology I had in mind,” she says. “We are very close to having a device we hope to be able to offer parents so we can collect the kind of data at home that we are now able to collect only in the hospital.”

In collaboration with Johns Hopkins Children’s Center neonatologist Christopher Golden, medical director of the newborn nursery, Gottlieb Sen and her team are now testing a promising model of the device in babies. Together, they are running a pilot project to see how well the device is able to collect data, first from healthy infants, and ultimately from babies with heart disease.

“This would be a very important advance for our patients at the Children’s Center, especially as we develop our pediatric heart center,” says Golden. “It fits perfectly into our essential mission — to provide the best possible outcome for newborns, including babies with heart disease.”

Golden enlisted colleague Julie Nogee, a neonatologist with a special interest in congenital heart disease, and they started recruiting. Parents were eager to help, Golden says.

Gottlieb Sen describes the monitoring device as a small article the baby wears comfortably on its body. Babies have very specific design requirements, especially for a device that would have to be worn long term. It has to account for the fact that they are constantly moving. It can’t impede movement or circulation. And it can’t be attached directly to their very sensitive skin.

“With the noninvasive device we’ve designed, we can monitor multiple vital signs simultaneously, collect that data in one place in real time, and catch changes that might signal a need for immediate intervention,” she says. “We are collecting many of the same vital signs that we routinely collect in an intensive care unit on a device that can be worn at home. And in the future, there is the potential of adding more modules of data that we might be able to collect.”

There is a possibility that physicians may someday monitor all newborns at home, gathering data that might lead to insights into and treatments for other conditions, including sudden infant death syndrome. “Monitoring patients remotely sort of gets at where we are going in medical care — from invasive to noninvasive, from inpatient to outpatient, from crisis care to prevention. It’s not only less expensive, it may produce better outcomes for our patients,” says Gottlieb Sen.