Hope, worry cloud research for kids born with heart defects
February is American Heart Month and some Minnesota families are sharing their experiences with a sometimes overlooked disease among newborns: congenital heart defects.
Studies show congenital heart defects are the most common birth defect in the U.S., affecting nearly 40,000 babies each year. The American Heart Association said thanks to progress in the world of research and treatments, outcomes have improved. But families still find themselves in delicate situations.
Stephanie Johnson is a Minnesota mother whose son Henry was born with a syndrome restricting oxygen supplies to the body. Henry endured several surgeries and now lives a mostly normal life like kids his age but the worry is not over.
“We also know that the honeymoon period doesn’t last forever,” Johnson acknowledged. “At some point his heart’s gonna get tired and he’ll be looking at likely a heart transplant at that point.”
Kids born with heart defects
Johnson hopes for additional medical breakthroughs but she and health experts noted congenital heart defect research is grossly underfunded. Another complication is government spending cuts sought by the Trump administration and the potential impact on agencies such as the National Institutes of Health. Policy experts say the research arm has already been dealing with flat funding levels.
In the absence of government support, current research heavily relies on awareness campaigns involving families navigating health scares. Johnson is among those trying to get the issue on the public’s radar.
“We need to move science forward,” Johnson urged. “Creating awareness for this is just incredibly important because awareness leads to funding, and funding leads to hope, and we’re hoping for a cure.”
Studies indicate congenital heart defects are underdiagnosed because milder symptoms are not always caught at birth. It means the disease is detected later in childhood or when the person becomes an adult.
Minnesota’s Mayo Clinic and its HeartWorks program, as well as the Heart Association, are part of a network of health entities pushing for research advancements.
