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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. 

   

 

 

 

Volunteerism provides me with a deeper connection to my community. The American Heart Association holds a special connection for me. My father died at home of a heart attack at the age of 47. I was 14. While this influenced many areas of my life, it most certainly affected my choice of profession. My first role out of nursing school was on a pediatric unit which provided cardiac care.  The AHA has promoted many advances in cardiac care that have delivered real and significant positive impacts to many families.

I have had the pleasure of being involved on a national level with The AHA Teaching Garden program. This program partners sponsors with schools to create gardens and provide curriculum on healthy eating for both students and their families. The opportunity to build the garden, plant and harvest with the students have been some of the most rewarding activities I have ever been involved in. To see children truly excited about fruits and vegetables is amazing!

I have been on the board of the Connecticut chapter for a few years and have taken on the role of chair this year. A benefit of volunteering is the opportunity to collaborate with the accomplished and talented members of the CT AHA Board and the staff of AHA. I  am excited to advance the great work already underway including increasing the number of Connecticut towns that are designated Heart Safe and continuing to educate on the benefits of CPR in schools and workplaces.  

Peter Evans, Christina Cahill and Lana Khuong know there is more than one way to save a life. They’ve organized CPR trainings, worked on tobacco cessation counseling protocols, coordinated cardiovascular research and fundraisers, and helped create healthy living lessons for adolescents.

They’re studying to become physicians at the University of Vermont’s Medical School, but they know that passing policy can also save lives. Lana said she was eager to become a part of a movement in which the government and civilians join to promote the well-being for all. So, all three have joined the American Heart Association’s Advocacy Committee.  

And we’re glad they did. Just recently, they talked about the dangers of sugary drinks and urged volunteers at the Vermont Heart Walk to sign petitions to Vermont legislators to pass legislation improving the availability and pricing of healthy food. They had a great time doing it and are eager to help us spread the word. Go team advocacy!