My name is Maria Thompson, and I played a role in passing a significant law. This is the story of my son, Liam, and my journey.
I, a stay-at-home mom to a two-year-old, became an advocate for change in my home state of West Virginia. The circumstances surrounding this mission are both heartbreaking and true.
On February 20, 2011, I welcomed my son, Liam Thompson, into the world through a C-section. My pregnancy had been smooth, so it came as a shock when the pediatrician informed us that Liam had a heart murmur. We reassured ourselves, as many said murmurs were common and often resolved on their own. However, our hospital lacked the technology to investigate further, so we were scheduled for an echocardiogram a couple of days later in a nearby city.
The day of the appointment was cold and gloomy as we drove an hour to the clinic. Our little one was peacefully asleep in his car seat, unaware of the looming concerns. Upon arrival, the ultrasound technician’s silence felt ominous. My husband asked for any news, to which she hesitated before saying, “I see holes.” My heart sank, and tears streamed down my face. She could provide no further information, as the cardiologist was unavailable, and we were left to wait for another two days for answers.
When we finally met with the cardiologist, he examined the echocardiogram and urgently instructed, “You must take him to the ER immediately, or he will die.” The following days were a blur; Liam was rushed to the ER, given medication to prevent his aorta from closing, and transferred to WVU Children’s Hospital for surgery. We learned that he had multiple life-threatening heart defects.
Over the next three months, Liam endured three heart surgeries, numerous procedures, and countless IVs, each leaving its mark. Tragically, on May 17, 2011, just two days after his third surgery and two days before his three-month birthday, Liam passed away.
During my time in the hospital, I stumbled upon a blog called Emma’s Journey. The author recounted the heartbreaking loss of her daughter, who died in her arms from an undetected heart defect at just five days old. Inspired by her story, she successfully lobbied for a law in Indiana requiring newborns to be screened for heart defects.
I thought to myself, “I can do that.” After losing Liam, I committed myself to raising awareness about heart defects, which affect 1 in 100 babies, and the simple, cost-effective pulse oximetry test that can help detect them. Most heart defects have no clear cause and cannot be prevented. In Liam’s case, his condition stemmed from a rare disorder called Williams Syndrome, affecting 1 in 30,000 infants. Regardless of the cause, the fact remained that a pulse ox test could have identified his condition early on.
The pulse ox test is a small band placed around a baby’s hand and foot to measure blood oxygen levels. If the reading is below 95% or if there’s a significant difference between the hand and foot readings, it may indicate a heart issue. This test should ideally be administered within 24 hours of birth or before the newborn leaves the hospital.
After equipping myself with knowledge about heart defects and pulse oximetry, I searched for online communities and resources. Discovering no existing pulse ox legislation in West Virginia, I launched a Facebook page called Pulse Ox West Virginia. Soon after, I connected with a mother whose son had heart complications, and together with another dedicated heart mom, we became the core team pushing for change.
Our connections with the local American Heart Association (AHA) proved invaluable. We presented our proposal: a law mandating pulse oximetry testing for all newborns in West Virginia. The AHA was enthusiastic about the initiative, and we swiftly got to work. By January 2011, our bill, named Liam’s Law, was introduced to the House of Delegates. We were thrilled when it passed through the initial stages.
However, we had more hurdles to clear. We reached out to friends and family, urging them to sign up for the AHA’s “You’re the Cure” program. There, they could receive updates on the bill and send letters and emails to support our cause. We utilized every social media platform available, including our Twitter account @PulseOxWV, to rally support from heart families across the state.
On March 10th, the moment we had been waiting for arrived: “Liam’s Law has passed!” We cheered, cried, and celebrated this monumental victory. We were honored to attend the signing ceremony with the Governor, where Liam’s Law was officially enacted. This day is etched in my memory forever.
Now that the law is in effect, every birthing facility must perform pulse oximetry tests on newborns before hospital discharge. While there are still regulatory details to finalize, hospitals can begin implementing this vital test immediately. By Spring 2013, compliance with the law will be mandatory.
To me, this law signifies that my son’s legacy will endure through the lives saved by this essential test. Despite his brief time with us, Liam has made a lasting impact. He fought valiantly, and now his story will help save others. Knowing that newborns will be tested because of my son fills me with indescribable pride.
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In summary, my journey has transformed from personal tragedy into an advocacy for vital health screening for newborns. Through perseverance and community support, we have established a law that will save lives and honor my son’s memory.