In honor of American Heart Month, mother, author and advocate Kristine Brite McCormick writes in this guest post how a simple screening might have saved the life of her baby daughter, Cora, and how she’s working to raise awareness of congenital heart defects and advocating for cheap, quick, non-invasive testing (that already exists) to be made standard in newborn testing.
As a new mom, I was still adjusting to the around the clock feedings, so when my newborn daughter woke in the early hours of a cold December morning in 2009, I rolled up and carefully sat in position to feed her—moving my breastfeeding pillow into good position. Just the sight of her face woke me up. She was so peaceful and looked so content. I knew in a few moments if I was lucky she’d have the “milk drunk” look on her face after nursing until she was full.
I wasn’t lucky. I never saw that face again. In fact, unknowingly, I was spending her last moments on Earth with her feeding on my chest. I looked up for a split second to tell my husband I loved him—and her—when I looked back down my newborn, Cora, was a sickly gray color. She didn’t seem to be breathing.
I jumped up. My husband called 911. We raced to the hospital. Cora was already dead and despite attempts to revive her, she was officially pronounced dead a few hours later at the hospital.
I was so confused, and predictably blamed myself. We opened our home for investigation, and I went over the entire last few hours—even reenacting how I was breastfeeding—for the coroner and a detective. After I was finished the coroner told me I’d done everything right, but I knew seemingly healthy babies don’t just die.
Two days later I found that the newborn that scored nine on both Agpar tests (the system used to classify the health of a baby shortly after birth and at birth), was the picture of good health in the hospital and showed no sign of an illness was in fact born with a congenital heart defect. I’d never even heard the term.
I later learned that something quite simple might have prevented her death.
A pulse oximeter used 24 hours after life had proven effective at catching defects in studies. I didn’t know the name for it, but I was familiar with the pulse oximeter or pulse ox. After all, I had the little clip on my finger most of my labor. I couldn’t understand how so something so simple, noninvasive, cheap and quick meant the difference between my daughter’s life and death.
Thankfully, soon that won’t be the case. Largely because of the role of parent advocates working across the nation, pulse oximetry screening for critical congenital heart defects (a subset of some of the most lethal defects) was added to the recommended uniform newborn screening panel after intensive review and work by the Secretary’s Advisory Committee on Heritable Diseases in Newborn and Children, and Secretary Sebelius’ approval.
While the recommendation sets up federal support the individual states are charged with adding or not adding screening. Thanks to Cora, Indiana now screens because of a bill authored in her honor last winter. Only one other state currently screens—New Jersey.
We’re close to the day when no other mother learns of her child’s heart defect from the coroner. Pulse oximetry can and will detect many of the previously undetected heart defects, but others cannot be detected through this method. More screening is needed, but for now we must work to implement the tools we have—including pulse oximetry. I can only hope that one day soon every baby is screened with the small, but not insignificant, vital taker.
February is American Heart Month. In honor of Cora, and the one in 100 babies born with a CHD, I hope you’ll take a moment to spread the word.
Kristine Brite McCormick lives in Indianapolis with her husband. Cora is her only child. She blogs about Cora at http://www.corasstory.org. She also maintains the website http://www.pulseoxadvocacy.com and helps rally other parent advocates to speak up for babies and advocate for pulse oximetry screening.