Joye Mullis, Mid-Atlantic Affiliate
As with all children, my son’s story began well before his birth. I had a fairly easy pregnancy, tainted by a couple of scares early on, but then all appeared well at my 20-week ultrasound.
I was healthy. Baby was healthy. Life was good.
At 28 weeks, I had a second ultrasound to check on the baby’s growth and that sent my husband, Jeramie, and me into a fast-moving downward spiral of more ultrasounds, stress tests, and worries. By the time our son, Ethan, was born on March 8th, 2009, I’d had a total of five ultrasounds, all attempting to diagnose what would be two birth defects – one urological in nature and one orthopedic.
“But...” an OB assured us, “...all of his major organs are healthy and strong!”
However, about eight hours after Ethan’s birth we learned that the doctor was not completely right. After struggling to nurse and being an overall quiet newborn - two major red flags that weren’t apparent to us first-time parents - it was discovered that Ethan had also been born with a critical congenital heart defect known as Pulmonary Atresia.
My post-partum nurse was bringing Ethan back to our room from his newborn screening when she noticed that “he just didn’t look right”. She wheeled him back into the nursery, hooked him up to a pulse oximeter, and found that his oxygen saturation level was in the mid-60s. That discovery began a flurry of activity, unbeknownst to us, which culminated in someone coming to our room hours later to tell us about the broken heart of our brand new son.
Ethan was rushed to Duke University Medical Center in Durham, North Carolina where he stayed for a total of nine and a half weeks, and where he underwent his first open-heart surgery at just three days old. He had a handful of surgeries during that time – one of which was to implant a permanent pacemaker – and he also survived full cardiac and pulmonary arrest.
Over five and a half years, and three open heart surgeries later, Ethan is now thriving! His story is that of strength and resilience. It's a story about rising above the brokenness and turning something so tragic into something so beautiful. It has taken a lot of work to get Ethan where he is today, and it all began with an observant nurse and a sticky light. One simple test saved my son’s life and could do the same for countless others.
I’ve been known to say that the diagnosis of Ethan’s heart defect didn’t just break one heart – it broke three. While Pulse Ox screening can’t take away the heartache of surgeries and complications, it can be the start of a lifetime of success for a baby born with a congenital heart defect. It was for Ethan, and every baby born in North Carolina deserves that same start.