Kristine Brite McCormick contacted me to tell the story of her beautiful daughter Cora and how a seemingly healthy newborn could be battling something life-threatening. Cora passed, but what was learned can save others. Here it is, in Kristine's own words.
Cora's Story: Screening Newborns for Heart Defects
A screening so simple it's called the fifth vital sign might have saved my daughter's life. Something so simple it's like getting your temperature or blood pressure taken stood between my daughter's life and death. I'm determined to make sure that doesn't happen again.
My pregnancy with Cora was normal and uneventful. I had no problems during labor and delivered a beautiful 8-pound, 10-ounce little girl on November 30, 2009. She scored nines on both her Apgar tests. I took her home with a clean bill of health.
One early morning, I nursed her. Everything was going great. As a new mom, I looked down almost constantly while she nursed. I looked up for a brief second to tell my husband something. I looked back down. Cora wasn't breathing. Cora was pale. Her face was covered in blood. I jumped up. We raced to the hospital. It was too late. At just five days old, Cora was dead.
Two days later, the coroner called and told me Cora died from a congenital heart defect. It was the first time I'd ever heard those words. When I asked my OB about it, she said it was rare.
I later found out CHD is not rare. It affects one in 100 babies according to the March of Dimes. I was devastated to learn Cora wasn't alone; CHD is one of the leading causes of deaths in infants, killing more babies than SIDS or accidents. A few weeks after her death, I learned that only half of all babies are diagnosed before birth. I learned that other babies are dying from late diagnosis, or suffering from delays and brain damage.
When I found out that a simple tool already found in every newborn nursery that costs less than a diaper change could have saved her life, I wasn't angry. I was determined to prevent other babies from suffering.
Pulse oximetry measures the oxygen saturation of a patient's blood. Almost all of us have had one at some point. For adults, it's a clip with a small light that goes on the end of your finger, and in newborns it looks like a Band-Aid.
Pulse ox doesn't find every CHD. There's no foolproof test for heart defects. But it helps. It's easy. It's cheap. It's not harmful to baby or mother. In fact, it's best when baby is calm, so the baby potentially never has to leave her mother's arms during the screening.
I'm not a fan of medical interventions. Had I learned something more invasive or painful caught some CHDs, I would have thought twice before becoming an advocate. But this is a no-brainer. It's so simple yet life-saving.
I'm proud to report, my home state of Indiana was the first to pass pulse oximetry screening for CHD legislation. I'm so proud of Cora, and what we've accomplished here. There's a national movement. Protocols are being developed. It's been recommended and studied. Two other states — New Jersey and Maryland — have pulse ox-related laws. Tennessee, Pennsylvania, and New York have bills.
Some hospitals already do this. If you deliver at a hospital that does the screening and your baby's saturation levels are low, the screening will most likely be repeated, and if the numbers are still low, an echo will be ordered.
I hope that never happens to anyone reading this. I honestly hope pulse ox doesn't catch any CHDs because I wish congenital heart disease didn't exist.
However, with mixed emotions, I realize that many mothers will first be alerted to their child's heart defect because of pulse oximetry screening. I'm sad that they have to enter the world of CHD. I'm glad they won't find out like I did, from the coroner.
Soon every baby in the nation will be screened with pulse ox. It's just a matter of time now, and now you know it's important. It affects real people. Sadly, Cora could have been your baby because most types of heart defects are not genetic but linked to random events.
What happened to Cora doesn't have to happen again.
If you'd like more information about pulse oximetry screening and how you can help, visit my website, pulseoxadvocacy.com. To read more about Cora, visit corasstoryblog.com.
Kristine Brite McCormick lives in Indianapolis with her husband, Ben, and two badly behaved dogs, Reggie and Lucy. Cora is her only child. She's an advocate and activist. Other projects include Operation Healing Hearts, helping children in Iraq with heart defects, and work with several other charities.