Updated: August 3, 2016
Originally Published: July 20, 2010
As a proud mother, I want to share a story that profoundly changed my life and the lives of many others. My daughter, Lily, was a remarkable child who, despite only being with us for five short days, became a catalyst for change. She was truly a little superhero.
Lily was born on November 30, 2009, weighing 8 pounds, 10 ounces, after a smooth and uneventful pregnancy. We brought her home just two days later, filled with joy and excitement. One morning, while I was breastfeeding her, I briefly turned to speak with my husband. When I looked back down, my heart dropped—Lily’s skin had turned gray, her face was covered in blood, and she wasn’t breathing. A frantic 911 call followed, and we rushed to the hospital, but it was too late. Lily had passed away.
In the days that followed, I was consumed by questions. The coroner informed me that Lily had a congenital heart defect, which caused blood to back up into her lungs. A few weeks later, I learned that a simple screening could have potentially saved her life—a pulse oximetry test.
This non-invasive screening uses a light sensor to measure blood oxygen levels. For adults, it’s a small clip on the fingertip; for infants, it resembles a tiny band-aid placed on their hand or foot. It’s often referred to as the fifth vital sign, alongside temperature and blood pressure. The reality that such an easy test could have altered the course of Lily’s life was staggering.
Statistics reveal that only about half of congenital heart defects (CHDs) are detected before birth; these defects range widely in severity. According to the March of Dimes, about 1 in 100 babies are born with a CHD. While pulse oximetry screening may not detect every defect, it can identify many of the more severe cases, especially when performed properly after 24 hours of life. Armed with knowledge of CHDs, parents are better equipped to recognize signs such as bluish skin, labored breathing, or feeding difficulties.
Determined to prevent other families from experiencing the heartbreak I endured, I reached out to my state senator, collaborating with him to draft a bill mandating the screening of every newborn in Indiana. I am proud to share that as of January 2012, this crucial screening is now law in our state.
While it can be daunting for parents to consider additional screenings for their children, this initiative is essential. Parents have the option to decline the screening, but at least every child in Indiana will have the chance to be tested—thanks to Lily’s legacy.
Other states, including New Jersey and Maryland, have also enacted similar laws, and parents across the country are advocating for similar measures. No mother should have to learn of her child’s heart condition in such a tragic manner.
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In summary, my daughter’s brief life sparked a legislative change that will save countless others. The simple act of screening newborns for congenital heart defects can make a tremendous difference, and I encourage every parent to advocate for this critical measure.