written by Kristine Brite McCormick

When I learned I was pregnant, I dove into learning everything I possibly could. I read about safe sleep, talked to fellow expectant mothers about my pregnancy cravings and listed off things that we would and wouldn’t do to my husband.

Through all of this, I never once came across the phrase “congenital heart defects.”

I didn’t learn about CHD from a doctor during my pregnancy, or a doctor shortly after my heart baby was born. I certainly didn’t learn about the most common of all birth defects from any of the many pregnancy websites I frequented.

I learned about CHD from the coroner.

My daughter Cora was born after a normal pregnancy and delivery. She was a chunky 8 pounds 10 ounces, and had rosy cheeks.

She was perfect.

Except unknowingly to us, her heart was not.

She got a clean bill of health in the hospital, and we took her home with an appointment to follow up with her pediatrician at 10 days. She never made it there.

One early morning I was nursing her when everything went wrong. One moment she was fine, and the next moment I looked up at my husband for a split second, looked back down and Cora was limp, pale and not breathing. We rushed her to the ER, but it was too late. She was dead.

The coroner called us a few days later with the preliminary cause, congenital heart disease.

Shortly after I learned about pulse oximetry screening for CHDs. I learned that if Cora had just been hooked up to a pulse oximeter for a few minutes, it could have triggered a series of events that saved her life.

Moms around the country were already working hard on the issue, and I learned much from them, like my friend Kelly in Missouri who worked to have a bill making pulse ox screening standard that following year (a bill passed there passed just this past year). Annamarie, Vi, Olivia and others were working to make CCHD screening part of the federally recommended newborn screenings.

I decided to join in and do what I could in Indiana. I studied the research and wrote my legislator, sharing Cora’s story and all of the research. A bill was introduced in January 2011, passed in May 2011 and in January 2012 every newborn in Indiana was being screened because of Cora’s Law.

I kept shouting from the rooftops, encouraging moms to get involved in advocacy efforts, ask about heart screening for their newborns and to demand better for our babies.

I’m proud that Cora and I have played a role in helping other babies.

More than anything, I hope we are one step closer to no mother learning about her baby’s congenital heart defect from the coroner.

Check out Cora’s Story for more information
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