From Heart Failure to Triumph: The Story of Ethan Mullis
Raleigh, North Carolina , March 05, 2013
March 8, 2009, 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. 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.
Ethan was undoubtedly a wanted addition to the Mullis family. Joye describes the day she found out she was pregnant as “fun.” “We very much wanted a baby and found out on July 1, 2008 that we were going to have one,” said Joye.
She recounts nothing about Ethan’s delivery as out of the ordinary. “Nothing made us think he could have possibly been in distress of any sort,” she said.
Following Ethan’s birth, he underwent a state mandated newborn screening panel. The newborn panel tests newborn babies’ temperatures, hearing, reflexes and various other areas of vital signs. However, heart testing is not a component of such screenings. Upon completion of Ethan’s screening, a nurse began to feel his disposition was unusual. The nurse later told Jeramie and Joye that something “just wasn’t right.” The nurse’s intuition prompted her to make a decision that would forever change Joye and Jeramie’s life and unequivocally save Ethan’s. She hooked Ethan up to a pulse oximetry machine.
A Pulse oximetry machine measures the amounts of oxygen saturation in a patient’s blood, making indicators of an abnormal heart easier to detect. Congenital heart defects are the most common birth defect in the United States and the leading killer of infants with birth defects. Despite that statistic, various hospitals throughout the state have the pulse oximetry machines, but none are legally required to test every baby for congenital heart defects. The screening, including nursing time to administer the test is less than $5 per baby, a meager expense in comparison to the amounts of babies who die yearly to congenital heart defects, undetected and detected alike.
The March of Dimes, whose mission is to improve the health of babies by preventing birth defects, premature birth and infant mortality, recently partnered with the American Heart Association to lead the fight against congenital heart defects. Through the partnership, on February 14, 2013, House Bill 105 and on February 18, 2013 Senate Bill 98 was introduced to legislation in which every hospital and birthing center would be required to test all babies for congenital heart disease before the baby and family can be discharged.
“Over the past few months we have worked together to educate and engage other stakeholders, parents and elected officials about the importance of congenital heart defect screening using pulse oximetry,” stated Betsy Vetter, Director of Government Relations for the American Heart Association. “With bills introduced in both the NC House and Senate, we are looking forward to working hard with our lawmakers to pass this legislation.”
At the time of Ethan’s first pulse oximetry test, his oxygen levels were in the mid 60’s. His levels should have been around 95 or higher.
Professor of Pediatrics, Doctor and longtime friend of March of Dimes, Stephen Kendall stated, “The support of pulse oximetry screening of all newborns is extremely important. This simple, easy-to-perform, non-invasive test with a high degree of diagnostic accuracy can lead to rapid, specific and often life-saving interventions for newborns affected with specific congenital heart defects."
Ethan was eventually diagnosed with Pulmonary Atresia with VSD. Pulmonary Atresia meaning his heart’s pulmonary artery was absent. The pulmonary artery carries blood from the heart to the lungs, and with this artery not functioning it is impossible for the blood to flow normally. VSD meaning, there was a large hole between the bottom chambers of his heart, the ventricles. This defect caused oxygenated and deoxygenated blood to mix before attempting to flow to his lungs.
To say Joye and Jeramie were shocked at their son’s diagnosis would be an understatement. “Finding out something was wrong with his heart was probably one of the rawest moments, emotionally, that I’ve ever been a part of,” Joye said. “I remember feeling like somebody had ripped the rug from under us.”
The next series of days were a blur for the Mullis family, Ethan underwent constructive heart surgery, and had a pacemaker implanted.
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 machines in hospitals, we will indisputably hear of more children who were not as lucky as Ethan. March of Dimes and American Heart Association are 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, but we need your help. Please take a moment to contact your state lawmakers now and urge them to support House Bill 105 and Senate Bill 98, Pulse Oximetry Newborn Screening. Additionally, log on to www.yourethecure.org or marchofdimes.com for more information.
Pictured: Ethan shortly after birth.
Pictured: Ethan with his loving parents, Jeramie and Joye.
Pictured: Ethan's Mom, Joye describes him as "all boy."