As 9-year-old Colby Elliott runs down the street after his dog and rides scooters with his brothers, Dillon and Ethan, he looks like any other fourth-grader. When he sits at the dining room table after a long day at school to sketch his favorite characters, there is no indication that he is anything but a typical kid. Colby, however, is not a typical kid. Beneath his cotton T-shirt he wears a 7-inch scar. Worn like a badge of honor, the “zipper,” as his family calls it, is a visible testament to the remarkable strength of a child who survived his first open heart surgery at six days old, and four more before the age of 3.
Colby was born with hypoplastic left heart syndrome (HLHS), a severe congenital heart defect. At a routine sonogram 16 weeks into Sheila Elliott’s pregnancy with Colby and his twin brother Ethan, the mom was told that “Baby B” appeared not to have all four chambers of his heart – the left ventricle was severely underdeveloped. The news came as a devastating blow to Sheila and her husband Jason who, at the time, had no known family history of heart disease. Ultimately, tests revealed that Jason was living with bicuspid aortic valve disease, a milder congenital heart defect commonly found in family members of individuals with HLHS. Years later, on a whim, Sheila listened to her son Ethan’s heart and detected a murmur. As it turns out, Ethan has the same defect as his father and may require surgical intervention someday; the family will keep a watchful eye.
Recent research has revealed a link in genetics and the occurrence of some congenital heart defects. Dr. Thomas Zellers, a pediatric cardiologist at Children’s Medical Center Dallas, encourages parents with a family history of heart defects to voice their concerns to healthcare providers early in the pregnancy in order to increase the likelihood of early detection, which can be lifesaving. “If they [parents] know their child is at risk they need to be strong advocates for their children and develop strong relationships with physicians,” he says. “Their healthcare providers should want to partner with them and they should want to partner with their healthcare providers.”
Colby, Ethan and Jason are three of approximately 1.4 million children and adults living with a CHD in the US. According to the Centers for Disease Control and Prevention, CHDs occur in about 1 percent – or 40,000 – births per year and are the most common cause of infant mortality. Defects occur on a spectrum, ranging from mild to critical. While many defects heal with time, or can be surgically corrected, others may require rounds of procedures and, at worst, can result in death. Colby’s heart is functioning fine for now, but at some point the boy will require a heart transplant. The family doesn’t know when; Sheila says it will be whenever his heart tells them. For Colby and his family, the pending heart transplant is simply a fact of life, although it does provoke a grimace from the 9-year-old when brought up.
Today, Colby is learning to live with the limitations of his heart, which is sometimes hard for the active child. Overexertion can result in chest pains and unplanned visits to the ER, so it is critical that he not overtire himself; his parents count it a blessing that he doesn’t care for sports. Yearly appointments are scheduled to monitor Colby’s heart and although he doesn’t enjoy being hooked up to monitors, he jokes that he is a big fan of the hospital “room service.”
The congenial fourth-grader is active in school with a flourishing social life and stays busy working to spread awareness about CHDs with his mom. Sheila and Colby have been featured in videos used by the American Heart Association for campaigns like Jump Rope for Heart and frequently visit local schools to share their story. February is Congenital Heart Defect Awareness Month, making it an especially busy time for the family.
The Elliotts hope that more awareness will result in an increase in donations towards research, more blood and plasma donations, and a greater willingness by more people to consider becoming organ donors – all practical ways to help those with heart defects. “I became an organ donor after I found out that he would need a heart transplant because it’s not fair for me to take someone’s heart when I’m not willing to give my own,” Sheila says. Colby’s condition also inspired the mother to make a dramatic career change. Once a schoolteacher, Sheila now works in organ recovery for Southwest Transplant Alliance, a nonprofit organ and tissue donor program.
In between public speaking engagements, shooting promotional spots for national organizations and visiting with congressmen to encourage funding for children’s hospitals, Sheila and Colby have also become highly involved in local support groups. The Elliott family is particularly invested in Mended Little Hearts, a support program for parents of children with heart defects or heart disease. The local chapter meets once a month to encourage and support one another in addition to performing acts of service for patients in the heart unit of local hospitals. Currently, the group is busy advocating for state legislation mandating that pulse oximetry screening take place within 24 hours after birth. The pulse ox is a clip placed on the infant’s finger that monitors oxygen levels. Multiple states have already adopted the legislation, which will be voted on in Texas’ 2013 legislative session. Sheila believes the screening is a common sense step towards saving lives by detecting defects sooner, and hopes to be at the capitol to see the bill passed.
Although Colby’s heart condition poses many challenges for the family, and there is always a lingering fear of the worst, Sheila believes that his heart makes him who he is. The mom says she wouldn’t change a thing; because of what Colby has been through he sees life through a different lens, living each moment to the fullest. “We’ve always called him the energizer bunny,” she says. “He goes and goes and goes. He lives life like he doesn’t want to miss a beat.”
For more information on the local Mended Little Hearts chapter visit dallas.mendedlittlehearts.net.