I hope you’ll indulge me as I share a profoundly personal journey. My daughter, Lily, is not your average child; she’s a hero. Her short life, just five days, sparked a change that could save countless others.
Lily was born on November 30, 2009, weighing 8 pounds, 10 ounces, after a smooth pregnancy and delivery. We brought her home two days later, elated and grateful. One morning, while I was breastfeeding her, everything seemed perfect. I turned to share a moment with my partner, and when I glanced back, my heart dropped—Lily was grey, her tiny face smeared with blood, and she wasn’t breathing. A frantic 911 call later, we were racing to the hospital, but it was too late. Lily was gone.
In the days that followed, I sought answers. The coroner revealed that Lily had a congenital heart defect, which led to blood backing up in her lungs. Weeks later, I learned how something as simple as a pulse oximetry test might have changed everything.
Most of us are familiar with pulse oximetry; it’s that small clip placed on a finger for adults, or a tiny band-aid-like sensor for infants. Known as the fifth vital sign, it’s as crucial as measuring temperature or blood pressure. Just imagine how different things could have been if Lily had been screened.
Congenital heart defects (CHDs) are surprisingly common, affecting about 1 in 100 newborns according to the March of Dimes, yet only half are detected before birth. These defects range from minor issues to severe conditions needing immediate surgery. While pulse oximetry screening doesn’t catch every CHD, it can identify many serious cases, especially when performed after 24 hours of life. Importantly, informing parents about this screening raises awareness of signs like blue-tinted skin or difficulty feeding, which can indicate CHDs.
Fueled by the desire to prevent other mothers from enduring the same heartbreak I faced, I reached out to my state senator, collaborating with him to draft a bill mandating pulse oximetry screening for all newborns in Indiana. I’m proud to say that as of January 2012, this screening became law.
While it may feel overwhelming to consider yet another procedure for our children, this is a simple, lifesaving measure. Parents can choose to opt out, but at least every child in Indiana now has a chance to be screened, thanks to Lily’s legacy.
Other states like New Jersey and Maryland have adopted similar laws, with many more exploring the potential for change. Parents across the country are advocating to ensure that no mother learns of her baby’s heart condition from a coroner.
For more insights on pregnancy-related issues, you might find this article on modernfamilyblog.com interesting. And for those looking into at-home insemination options, Make a Mom offers reliable kits to support your journey. Additionally, the CDC is an excellent resource for information on pregnancy and home insemination.
No mother should ever discover her baby’s broken heart from a coroner. Instead, we can advocate for change and support one another through these journeys.
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