When Joshua Lemacks was born via c-section, his parents knew ahead of time that there was a problem. He was immediately whisked away to the hospital next door for his first of three open-heart surgeries. His mother, Jodi says, ”The first time I saw Joshua the next day, it was hard to see the baby beneath the tubes and wires hooked up to him. It felt surreal, like I couldn’t possibly be looking at my own baby.” Joshua survived the first surgery and struggled against infections and other complications for almost two months after that. Then one day, he turned a corner—truly a miracle—and his family finally got to bring Joshua home. He has made it through two more open heart surgeries since then, and today is a happy, healthy nine-year old who loves baseball, golf, his family and life.
This scenario would have been entirely different if Joshua had not been screened (in his case, before birth) for Critical Congenital Heart Defects (CCHD). Joshua’s type of heart defect is 100% fatal if not caught—usually within a couple of weeks of life. About half of the babies with his heart defect are not diagnosed pre-birth, so screening soon after birth becomes vital and life-saving.
There are about 10,000 babies each year born with CCHD that, like Joshua’s, can be diagnosed through screening. Many babies have died or coded because their heart defect was not caught in time. The sooner a baby is screened, the more likely the baby will get life-saving care.
Pulse oximetry screening, now mandatory in some states, is simple, non-invasive and inexpensive. Most states already conduct newborn screening, and are working to include pulse oximetry screening in their standard newborn screening panel as a mandate. This law in New Jersey saved at least one life within 24-hours of implementation.
Virginia’s Governor has already issued an Executive Order creating a work group to develop a plan for implementation. Not all facilities provide pulse oximetry screening, and it is our hope that they will move quickly to make sure that they do.