Let me take a moment to brag a bit—because when your child changes the law, it’s worth celebrating! My daughter, Emily, was no ordinary baby. In fact, she was a superhero in her own right, saving lives even though she only graced this world for five short days.
After a perfectly normal pregnancy, I welcomed 8-pound, 10-ounce Emily into my life on November 30, 2009. We were over the moon and brought her home just two days later. One morning, while I was feeding her, I turned away for just a moment to chat with my partner. When I looked back, my heart sank—Emily was grey, her face covered in blood, and she wasn’t breathing. A frantic 911 call followed, and we rushed to the hospital, but tragically, it was too late. Emily was gone.
For two agonizing days, I was left searching for answers. The coroner revealed that Emily had a congenital heart defect, which led to blood backing up into her lungs. As I processed this heartbreak, I learned about a simple solution that might have saved her life.
Most of you have probably had a pulse oximetry screening done—it’s that little clip that checks your blood oxygen level. For babies, it’s just as non-invasive, resembling a tiny bandaid wrapped around their hand or foot. This test is often referred to as the fifth vital sign, alongside temperature and blood pressure. Imagine the relief knowing that something so easy could have potentially spared my daughter’s life.
Statistically, only about 50% of congenital heart defects (CHDs) are detected before birth, and they vary greatly in severity—from minor issues to conditions requiring immediate surgery. According to the March of Dimes, about 1 in every 100 babies is born with a CHD. While pulse oximetry screening doesn’t catch every single defect, it can detect many of the most severe cases, especially when done properly after the first 24 hours of life. Plus, when parents are informed about the screening, they’re more likely to recognize symptoms like heavy breathing or a bluish tint in their babies.
Determined to make a difference, I reached out to my state senator, and together, we crafted a bill to mandate screening for all newborns in Indiana. I’m incredibly proud to say that, as of January 2012, this screening is now law in our state, ensuring that no parent has to receive such devastating news as I did.
Other states like New Jersey and Maryland have followed suit, and parents across the country are advocating for similar changes. They’re meeting with lawmakers and raising awareness through social media, all to prevent tragedies like Emily’s. No mother should ever have to learn of her child’s heart issues from a coroner.
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In summary, my daughter’s brief life sparked a vital change in Indiana law, ensuring newborn screenings for congenital heart defects. This journey, while heart-wrenching, has driven a mission to protect other families from similar heartbreak.