My name is Jessica Thompson, and I played a role in passing significant legislation in West Virginia. This is the story of my son Lucas and my journey toward advocacy.
In February 2011, I welcomed my son, Lucas, into the world via C-section. My pregnancy had been uneventful, so it was shocking when the pediatrician informed us that Lucas had a heart murmur. We were reassured by friends and family that murmurs were common and often harmless. However, our hospital lacked the technology to investigate further, so we were referred to a facility an hour away for an echocardiogram.
The day of the appointment was cold and dreary, and Lucas was blissfully unaware of the impending ordeal as he slept in the back seat. Upon arriving and settling in, the ultrasound technician’s silence became unsettling. My husband broke the tension by asking, “Did you find anything?” After a long pause, she replied, “I see holes.” My heart sank, and tears streamed down my face. She could not provide further information, as the cardiologist was unavailable; we were rescheduled for another two days later.
When we finally met with the cardiologist, he quickly reviewed the echocardiogram and urgently instructed us to take Lucas to the ER immediately or risk losing him. Those next few days passed in a blur as we rushed Lucas to receive medication to keep his aorta from closing, followed by a transfer to WVU Children’s Hospital for surgery. Lucas was diagnosed with multiple life-threatening heart defects that required immediate treatment.
Over the following three months, he underwent three heart surgeries, numerous procedures, and countless IVs. Tragically, on May 19, 2011, just two days after his third surgery and two days before his three-month birthday, Lucas passed away.
During my time in the hospital, I discovered a blog called Ella’s Journey. The author shared the heartbreaking story of her daughter who died from an undetected heart defect at just five days old. That mother successfully advocated for a law in Indiana requiring all newborns to be screened for heart defects. Inspired, I resolved to do the same in honor of Lucas.
I learned that congenital heart defects affect 1 in 100 babies, and a simple, inexpensive test called pulse oximetry could help detect these issues. The test, which involves placing a small band around a newborn’s hand and foot to measure oxygen saturation levels in the blood, is crucial. If oxygen levels are below 95% or if the difference between the hand and foot readings exceeds 3%, this indicates a potential heart defect. Ideally, this test should be performed within 24 hours of birth or before discharge from the hospital.
Determined to raise awareness, I began searching for online resources, blogs, and support groups focused on heart defects. I found little information about pulse oximetry legislation in West Virginia, so I started a Facebook page called Pulse Ox WV. Shortly thereafter, I connected with another mother, Sarah, whose son also faced heart challenges. Together with another heart mom, we formed a coalition to drive our initiative forward.
As mothers of children with serious heart conditions, we networked with the local American Heart Association (AHA) and presented our proposal to pass a law mandating pulse oximetry testing for newborns in West Virginia. The AHA responded enthusiastically, and within a few months in January 2011, “Lucas’s Law” was introduced in the House of Delegates.
We rallied support through social media, encouraging friends and family to sign up for AHA’s “You’re the Cure” program for updates on the bill and to send messages to lawmakers. Our collective effort gained momentum, and on March 10th, we received the news we had been waiting for: Lucas’s Law had passed! The joy and relief were overwhelming as we celebrated this monumental achievement.
We were honored to attend the official signing ceremony with the Governor, where Lucas’s legacy was solidified as a law. This legislation mandates that all birthing facilities conduct pulse oximetry testing on every newborn before discharge. Although the full implementation timeline extends another year, hospitals can begin testing as soon as they are ready. By Spring 2013, it will be mandatory.
This law means that my son’s brief life will continue to save others. Although Lucas was with us for only three fleeting months, his impact will endure as countless newborns receive critical screenings due to his legacy. Knowing that future generations of babies will be tested in his memory is an indescribable honor.
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In summary, my journey from grief to advocacy led to the successful passage of a law that will save lives. Lucas’s legacy will live on as every newborn is screened for heart defects, giving families hope for healthier futures.
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