Hello, I’m Maria Thompson, and I played a part in passing a significant law in West Virginia. This is the story of my son, Liam, and my journey alongside him.
Yes, me, a dedicated stay-at-home mom to my two-year-old, helped enact a law in our state. The reason behind this is both poignant and true. On March 15, 2012, I welcomed my precious baby boy, Liam Thompson, into the world through a C-section. My pregnancy had been smooth sailing, with no red flags, so it was a shocking moment when the pediatrician informed us that “he has a heart murmur.” We tried to remain calm, as we were reassured that murmurs are common and often resolve on their own. However, since our local hospital lacked the necessary technology, we were referred to another facility for an echocardiogram just two days later.
The day of the appointment was gloomy and cold as we drove an hour to the ultrasound office, with our sweet newborn peacefully sleeping in the backseat, unaware of the worries looming over us. Once we arrived, the ultrasound technician’s silence felt ominous. My husband finally asked, “Do you see anything?” After a pause, she replied, “I see holes.” My heart sank, and tears flowed down my cheeks. Unfortunately, she couldn’t provide any further information without the cardiologist present, so we were left with only our fears as we drove home.
When we finally met with the cardiologist, he examined the echo and turned to us with grave news: “You need to take him to the ER immediately or he will die.” The following days became a blur as Liam was rushed to the emergency room to receive medication to keep his aorta from closing before being transferred to a specialized children’s hospital for surgery. It turned out that Liam had multiple life-threatening heart defects that required immediate attention.
Over the next three months, he underwent three heart surgeries and countless procedures, all of which left him with visible scars. Tragically, on June 10, 2012, just two days after his third surgery and shortly before his three-month birthday, Liam passed away.
During my time in the hospital, I stumbled across a blog named “Ella’s Journey.” The mother shared her heart-wrenching experience of losing her daughter to an undetected heart defect while breastfeeding at just five days old. Inspired by her story, I thought, “I can do that.” After losing Liam, I became determined to raise awareness about congenital heart defects, which affect 1 in 100 babies. A simple, inexpensive, and non-invasive test called pulse oximetry can help detect these issues. Many heart defects are caused by unknown factors, and they can’t be prevented. In Liam’s case, his condition resulted from a rare genetic disorder known as Turner Syndrome.
The pulse ox test involves a small band that wraps around a baby’s hand and foot to measure the oxygen levels in their blood. If the oxygen saturation is below 95% or if there’s a significant difference between the readings from the hand and foot, it may indicate a heart problem. This test should ideally be conducted within 24 hours of birth or before the newborn leaves the hospital.
Once I educated myself about heart defects and pulse oximetry, I began searching online for communities and resources related to these topics. I found no existing laws regarding pulse ox testing in West Virginia, so I created a Facebook page called Pulse Oximetry Awareness West Virginia. Shortly after, I connected with another mom whose son faced similar challenges, and together with another heart mom, we became the driving force behind this initiative.
Both of my new friends had personal experiences that made them passionate about this cause, and with their connections to local heart health organizations, we set out to present our plan to the American Heart Association (AHA). They embraced our vision to pass a law requiring pulse ox testing for all newborns in West Virginia. In January 2012, we introduced “Liam’s Law” to the House of Delegates. We eagerly awaited updates, and when we received the news that the bill had passed its first stage, we were overjoyed!
Our campaign continued as we rallied support through social media, personal blogs, and community outreach. We encouraged friends and family to sign up for updates through the AHA’s “You’re the Cure” program, sending pre-written emails to legislators and sharing our mission far and wide. On March 15th, we received the message we had all been waiting for: “Liam’s Law has passed!” The elation we felt was indescribable!
We were honored to be present at the signing ceremony with the Governor, where Liam’s Law was officially enacted. That day marked an unforgettable moment in our lives.
Now, with this law in place, every birthing facility is mandated to perform a pulse oximetry test on newborns before they leave the hospital. While we still have some regulatory details to finalize, the law will be fully implemented by Spring 2014.
For me, this law is a testament to my son’s legacy, ensuring that his brief life will contribute to saving others. Even though Liam was with us for only a short time, his impact will resonate through the lives saved by this simple test. Knowing that newborns will be screened because of my son is a feeling like no other.
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In summary, my journey from a grieving mother to a lawmaker advocating for newborn health is a powerful reminder of how love can fuel change. Together, we can make a difference, one heartbeat at a time.