In June of 2003, my third child, Joshua, was born via c-section. Diagnosed with a Critical Congenital Birth Defect (CCHD) before birth, he was immediately whisked away to the hospital next door for his first of three open heart surgeries, without me even getting a glimpse of him.
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 managed to survive the first surgery, but then struggled against infections and other complications for almost two months. My husband and I, along with Joshua’s brothers and other relatives, stood by Joshua’s crib praying that he would make it, but mostly praying that this little guy would not suffer. Then one day, Joshua turned a corner—truly a miracle—and we finally got to bring Joshua home in August; he has made it through two more open heart surgeries since then. Today, he 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 for CCHD (in his case, before birth). Working for Mended Little Hearts, a national non-profit that helps families who have children with heart defects, I know too well the devastating consequences of lack of screening for CCHD. I get emails, and sometimes calls, from parents of babies who died or coded because their heart defect was not caught in time, and it breaks my heart.
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 this heart defect are not caught pre-birth, so screening soon after birth becomes vital and life-saving. There are about 10,000 babies each year born with critical congenital heart defects that, like Joshua’s, can be caught through screening. The sooner a baby is screened, the more likely the baby will get life-saving care.
Parents are looking to their hospitals and their states to help them. Pulse oximetry screening, now mandatory in some states, is simple, non-invasive and inexpensive. (For more information on pulse oximetry screening in states visit www.pulseoxadvocacy.org. This website was created by Kristine Brite McCormick who lost her baby, Cora, due to lack of screening.) Most states already conduct newborn screening, and many are working to include pulse oximetry screening in their standard newborn screening panel. In New Jersey, such a law saved at least one life within 24-hours of implementation.
As of April 2014, in AHA's Mid-Atlantic Affiliate, You're the Cure advocates and Mended Little Hearts have helped make pulse oximetry screening for all newborns the standard of care in MD, VA, NC, and SC, and I am proud to have been able to support the process.