My name is Sarah Henderson, and I was instrumental in passing a significant law in West Virginia. This is the story of my son, Alex, and the journey that led us to advocate for newborn heart health.
On February 20, 2011, I welcomed my son Alex into the world via C-section. My pregnancy had been uneventful, so it was alarming when the pediatrician announced that Alex had a heart murmur. We reassured ourselves, believing that murmurs were common and often resolved on their own. However, due to our hospital’s lack of cardiac diagnostic technology, we were referred for an echocardiogram two days later.
The day of the appointment was dreary and cold as we traveled an hour to the ultrasound facility. Our newborn was blissfully unaware and sleeping in the backseat. Upon arrival, the technician’s silence was unsettling. My husband asked, “Do you see anything?” She paused, then said, “I see holes.” My heart sank as tears streamed down my face. She wasn’t permitted to disclose more information, leaving us in a state of uncertainty until we could see the cardiologist.
When we finally met with the cardiologist, he reviewed the echocardiogram and urgently instructed us, “You need to take him to the ER immediately or he will die.” The ensuing days were a blur. Alex was rushed to the ER, placed on medication to stabilize his aorta, and then transferred to the WVU Children’s Hospital, where he awaited surgery. We learned that Alex had multiple life-threatening heart defects that required immediate intervention.
Over the next three months, Alex underwent three heart surgeries and numerous procedures, leaving him with scars that told his story. Tragically, on May 17, 2011, just two days after his third surgery and two days before his three-month birthday, Alex passed away.
During my time in the hospital, I discovered a blog called “Lily’s Story.” The author recounted how her daughter had died from an undetected heart defect at just five days old. Inspired by her journey, this mother successfully advocated for a law in Indiana mandating that all newborns be screened for heart defects. I thought to myself, “I can do that.” After Alex’s passing, I committed myself to raising awareness about congenital heart defects, which affect 1 in 100 babies, and the simple, inexpensive pulse oximetry test that can help identify them.
Understanding Pulse Oximetry
Pulse oximetry is a non-invasive test involving a small sensor placed on the baby’s hand and foot to measure blood oxygen levels. If the levels fall below 95%, or if there is a significant difference between readings from the hand and foot, it may indicate a heart problem. This test should be performed within 24 hours of birth or before the baby is discharged from the hospital.
As I learned more about congenital heart defects and pulse oximetry, I sought out online communities to connect with others who shared similar experiences. Finding no existing pulse oximetry legislation in West Virginia, I established a Facebook page called “Pulse Ox WV.” Shortly after, I connected with another mother whose son faced similar challenges, and together, we became advocates for this cause.
With our collective experiences and connections within the local American Heart Association (AHA), we approached them with our plan to introduce a law requiring pulse oximetry testing for all newborns in West Virginia. The AHA fully supported our initiative, and by January 2011, we had introduced “Alex’s Bill” to the House of Delegates.
As we awaited updates, we mobilized our community through social media, encouraging people to sign up for the AHA’s “You’re the Cure” program for updates and to send messages of support to legislators. Our efforts garnered widespread support from heart families across the state, all recognizing the potential life-saving impact of pulse oximetry.
On March 10th, the moment we had been waiting for arrived: “Alex’s Bill has passed!” We celebrated with tears of joy and relief, knowing that we had made a difference. The signing ceremony with the Governor was a moment I will cherish forever.
With the passage of this law, every birthing facility in West Virginia is now required to perform pulse oximetry testing on all newborns prior to discharge. While there are still implementation details to finalize, the law will be fully enforced by Spring 2013.
For me, this law is a testament to my son’s legacy. Though Alex’s life was tragically short, he has inspired change that will save countless lives. Knowing that newborns will be screened because of his story fills me with an overwhelming sense of purpose.
Additional Resources
If you are interested in learning more about home insemination and its connection to family health, you can check out this informative article. For those looking for resources on fertility, this site offers valuable information on the at-home insemination process. Additionally, the Genetics and IVF Institute serves as an excellent resource for understanding pregnancy and reproductive health.
In summary, my journey from a grieving mother to an advocate for newborn heart health has been transformative. I am proud to have played a role in passing a law that will ensure every newborn in West Virginia is screened for heart defects, potentially saving lives and honoring my son’s memory.