As a mother, I’ve experienced a profound and life-altering event that has inspired me to advocate for change. My daughter, whom I fondly remember as a hero, saved lives despite her own tragic fate. She lived only for five days but left an indelible mark on the world.
After a smooth pregnancy, I welcomed my daughter, Mia, into the world on November 30, 2009, weighing 8 pounds and 10 ounces. Two days later, we brought her home, filled with joy and anticipation. One fateful morning, as I was breastfeeding Mia, everything seemed normal until I turned to speak with my husband. When I looked back down, my heart sank—Mia was gray, her face covered in blood, and she was not breathing. The frantic 911 call led us to the hospital, but despite their efforts, Mia could not be saved.
For two agonizing days, I grappled with the question of what went wrong. It was later revealed by the coroner that Mia had a congenital heart defect, which had caused blood to back up in her lungs. A few weeks after this tragic loss, I learned about a simple procedure that could have potentially saved her life.
Pulse oximetry is a non-invasive test that measures the oxygen saturation levels in the blood. For adults, this is typically done with a small clip on a fingertip; for infants, it resembles a tiny bandage placed around their hand or foot. This screening is often referred to as the “fifth vital sign,” comparable to taking a temperature or blood pressure. Imagine the relief of knowing that such an easy test could have made a difference for Mia.
Research indicates that only about 50% of congenital heart defects are identified before birth. These defects can range from minor issues to severe conditions requiring immediate surgical intervention. According to the March of Dimes, approximately 1 in every 100 newborns is affected by a congenital heart defect. While pulse oximetry screening does not detect every condition, it could have identified Mia’s defect, especially if conducted within the first 24 hours of life. Furthermore, informing parents about the screening raises awareness about the signs of congenital heart defects, such as bluish skin, heavy breathing, and feeding difficulties.
Motivated by Mia’s story, I reached out to my state senator, working together to draft a bill ensuring that every newborn in Indiana undergoes this important screening. I am proud to say that as of January 2012, this screening is now mandated by law in our state. While some parents may choose to opt out, at least all newborns will have the opportunity to be tested, in memory of Mia.
Other states, including New Jersey and Maryland, have enacted similar laws, and more are considering these measures. Parents across the nation are collaborating to ensure that no other mother receives devastating news about her child’s heart from a coroner’s office.
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In conclusion, my experience has taught me the importance of awareness and advocacy in healthcare. There is hope in preventing tragedies like Mia’s through simple screenings and informed choices.
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