"Our world fell apart," says Kenny, a financial planner. Emma had not one, but two congenital heart defects, plus a genetic disorder called Turner Syndrome. "It was shocking. You think that if you do all the right things, one plus one is always going to equal two." But nothing about Emma’s situation was going to be simple or predictable.
"Her combination of disorders was unique," says Jerilyn. "She didn’t follow any kind of pattern. Everything about her treatment was very reactive. That was hard, to always feel like we were following behind instead of getting ahead." Emma spent the first nine months of her life in the cardiovascular intensive care unit at ACH. She had two open heart surgeries, an abdominal surgery, and so many minor procedures, Jerilyn says, "I think we’ve lost count."
Kenny says the support they received at ACH became the ground under their feet. "After the initial shock, we settled into a pattern. ACH became our home. The nurses became our brothers and sisters. The doctors became our family. They understood what we were going through."
There was no blueprint for Emma’s treatment or prognosis. With so much uncertainty, Jerilyn says it was important to feel the doctors were communicating openly and honestly. "Kenny and I are both planners, and we wanted the information so we could plan. When there were no answers, we knew they shared our frustration. They wanted to solve it too."
"It was a rollercoaster of emotion," recalls Jerilyn. The darkest point, she says, was just before Emma’s first Christmas. A post-surgical complication was preventing her from absorbing nutrients, and Kenny and Jerilyn were told to prepare for the worst. Jerilyn heard about a heart surgeon who was an expert in Turner’s Syndrome, and Emma’s cardiologist agreed to consult with him over the telephone. "He advised us to stop feeds completely for three weeks and just give her IV fluids. It seemed almost inhumane. But he told us that was the only way to get the lymphatic system to repair itself."
She credits the expert pediatric cardiology team at Arkansas Children's for being receptive to outside expertise. "They were willing to go out of their way to save Emma," she says.
Emma’s feedings were stopped, and between Christmas Eve and Christmas Day, her body stopped draining nutrients. "It was truly a Christmas miracle."
Emma has been out of the hospital for the last two years, though she still sees multiple specialists for follow-up several times a year. "She is a joy to everyone who gets to know her," says Jerilyn.
"She’s funny and happy." Since Emma is non-verbal and has sensory issues, she brings something special to the Arkansas Children's Ambassadors program, she says. "There’s a lot of us who have kids who don't talk or walk, who need superheroes too. Some kids like Emma might feel comfort in seeing someone like them, smiling and happy. Her limitations do not define her."
If you or someone you know are interested in learning more about the Arkansas Children’s Ambassadors program, please call 800-880-7491 or visit https://www.archildrens.org/giving!
Thank you for being a champion for children!