Cora’s Legacy: Changing the Course of Newborn Screening

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I hope you’ll indulge me in a moment of proud momma reflection. My daughter, though she was with us for only five days, has made a significant impact. She was a true little hero who saved lives, even if just through her story.

Cora was born on November 30, 2009, after a smooth and uneventful pregnancy. Weighing a healthy 8 pounds, 10 ounces, she came into the world after a normal labor. Just two days later, we brought her home, excited and full of dreams. One morning, as I prepared to breastfeed her, everything seemed perfect. I glanced up to speak with my husband and, when I looked back down, my heart dropped. Cora’s skin had turned grey, her face was marred with blood, and she was no longer breathing. A frantic 911 call and a rush to the hospital followed, but tragically, it was too late. Cora was gone.

In the days that followed, I grappled with the bewildering loss. It wasn’t until I received information from the coroner that I learned Cora had a congenital heart defect that led to blood backing up into her lungs. This heartbreaking revelation was compounded by the knowledge that a simple test might have saved her.

Most parents are familiar with pulse oximetry—a small sensor that measures blood oxygen levels. For adults, it’s a clip for the finger; for babies, it resembles a tiny bandage placed on the hand or foot. It’s often referred to as the fifth vital sign, akin to measuring temperature or blood pressure. The thought that Cora’s life could have been spared by something so straightforward is overwhelming.

Congenital heart defects (CHDs) are more common than many realize, affecting about one in every 100 newborns. While only half of these defects are detected before birth, pulse oximetry screening can identify some of the most severe cases, especially when performed after the first 24 hours of life. This screening raises awareness among parents, prompting them to monitor for symptoms such as difficulty breathing or feeding issues.

Motivated by Cora’s story, I reached out to my state senator and collaborated with him to draft legislation ensuring that every newborn in Indiana is screened for CHDs. I’m proud to share that, as of January 2012, this screening is now mandated by law in our state. While I understand that additional screening can be daunting for new parents, this is a vital measure that provides every child with the opportunity for early detection. Parents can choose to opt out, but thanks to Cora, every newborn in Indiana has the chance to be screened.

Other states, including New Jersey and Maryland, have also enacted similar laws, and many more are considering this important step. Parents across the country are advocating to ensure that no mother has to hear about her child’s heart defect from a coroner.

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In summary, Cora’s brief life has led to meaningful change, ensuring that every child in Indiana has access to essential heart screenings. Her memory continues to inspire advocacy, making a lasting impact on the lives of countless families.