Raleigh, NC March 5, 2013 — Almost four years to date, Ethan Kendrick Mullis was born to Jeramie and Joye in Raleigh, North Carolina. Yet, at only nine hours old, it was discovered that he had a critical congenital heart defect (CCHD). Ethan subsequently experienced heart failure before completing his first week of life, underwent corrective heart surgery at just three days old and went into cardiac arrest before six weeks of age. Fortunately, Ethan’s heart defect was detected via pulse oximetry screening; which led to his eventual diagnosis of Pulmonary Atresia with VSD.
Wednesday, March 6, March of Dimes volunteers from across the state will gather in Raleigh to meet individually with their legislators during the March of Dimes 2013 Advocacy Day on behalf of North Carolina babies. The most urgent priority for the 2013 March of Dimes Advocacy Day is the passage of legislation aimed at detecting CCHD in infants through pulse oximetry screening. Pulse oximetry is a non-invasive screening test that helps identify newborns with heart defects at birth prior to discharge from the hospital and potentially saving their lives. House Bill 105, introduced by Representative Jim Fulghum and a companion Senate Bill introduced by Senator Andrew Brock will add this simple test to the state newborn screening panel.
“We decided this was an easy recommendation because critical congenital heart disease is well known, well described and detectable,” said Representative Jim Fulghum, the bill’s lead sponsor and a Wake county neurosurgeon. “It will prevent children from leaving the hospital who will soon return in distress because of an undetected heart defect. We believe it will pass,” said Fulghum.
Senator Brock added, “I am a parent and the spouse of a medical professional. Giving our children a healthy start in life is one of the most important things we can do for the future of North Carolina.”
After 9 ½ weeks, multiple surgeries, countless nights of uncertainty, innumerable prayers and tears, Joye and Jeramie were given the green light to take their resilient yet precious baby home. “This experience has been a rollercoaster— but I’m so grateful for this journey,” said Joye.
Ethan currently is a thriving 3 ½ year old. He enjoys attending preschool and playing with his toy tool kit, similar to his Dad’s real tool kit. He is followed by a cardiologist and will have to undergo numerous heart surgeries and procedures throughout his life. However, his family is hopeful that there will come a time where he won’t need any more surgeries or procedures.
Stories like Ethan’s are riveting and emotionally moving, yet without the use of more pulse oximetry screenings in hospitals, we will indisputably hear of more children who were not as lucky as Ethan. March of Dimes is working diligently to ensure babies are not only born healthy but leave the hospitals or birthing centers fully equipped to live a healthy and happy life. Join us, tomorrow, March 6 at the State Capitol as we advocate for North Carolina babies.
In 2013, the March of Dimes celebrates its 75th Anniversary and its ongoing work to help babies get a healthy start in life. Early research led to the Salk and Sabin polio vaccines that all babies still receive. Other breakthroughs include new treatments for premature infants and children with birth defects. About 4 million babies are born each year in the United States, and all have benefitted from March of Dimes lifesaving research and education.
The Mullis family is available for interview upon request.