She's All Heart
Emma Wasson sets the example of what strength and perseverance look like. She was born with a heart defect and diagnosed with the rare genetic condition Turner syndrome. Through their journey, the Wasson family has found a passion for advocacy and education, and are heading up the construction of North Little Rock’s first inclusive playground.
By Amy Gordy, Photography by Lily Darragh
To meet Emma Michele Wasson is to immediately become one of her cheerleaders. She's 4 years old and only 27 pounds, but she’s got more power and charisma than most adults. Her mother, Jerilyn Swalve-Wasson, is another force to be reckoned with. Jerilyn is Emma’s primary caretaker. She holds a part-time job, but her full-time job is Emma. In Emma’s short four years, Jerilyn has developed a rigorous routine. She keeps a binder in the family room that she and husband, Kenny, refer to as “the pink book.” Within its pages they note any changes, no matter how subtle, in Emma’s health and behavior so they can easily trace patterns and know exactly when a new issue may have started to show symptoms. In the bathroom is Emma’s extensive list of medications laminated and taped to the mirror. Several new additions are written in near the bottom of the Excel document.
In early December, Emma had just returned home from an 18-day hospital stay that Jerilyn feared could have been her baby’s last. “Emma got hit with two respiratory viruses and one stomach virus at once. Her immune system was really compromised, so we are keeping her out of school and taking extra precautions with her until her strength is back,” Jerilyn said.
The Wassons’ road has been one with ups and downs and a series of “miracles,” according to Jerilyn, that have led them to where they are today.
“I’ve suffered from endometriosis since I was 12 years old. Kenny and I were told we had a very poor chance of conceiving on our own, so we opted to try the most invasive route of in vitro fertilization, and were told even then there was still only a small chance. The odds were not in our favor from the very beginning.”
The in vitro worked, however, and Jerilyn became pregnant with a baby girl, Emma. “My pregnancy was pretty normal. I thought it was odd that I didn’t get very big, but I figured I was just lucky. Then I noticed the baby wasn’t moving and kicking as much as other babies seem to do.” At 37 weeks, Jerilyn went in for a stress test and an ultrasound didn’t pick up any abnormalities, but Jerilyn and her doctor both had a gut feeling that something wasn’t right. She was induced a week later due to heart rate decreases.
“She came very fast. It was a stressful delivery. Her heart rate kept dropping every time I would push, so they finally turned the monitors away from me. When she was born I had a feeling something wasn’t right. The nurse took her and thought she looked a little blue. It wasn’t a very obvious color, but she called the on-call pediatrician who came and detected a heart murmur. They took her straight to Arkansas Children’s Hospital.”
Emma embarked on an eight-month stay at the hospital that was full of close calls and procedures with slim odds. At 6 days old, she had her first heart catheter. She was diagnosed with pulmonary atresia with intact ventricular septum, a congenital heart defect that affects approximately 7-8 out of 100,000 births. Six weeks later, she was diagnosed with Turner syndrome, a genetic condition affecting only girls due to a missing X chromosome. Only 2 percent of fetuses live to term with this condition, and only two other people in medical journal history have had Emma’s combination of disorders—Emma is the only known survivor.
During the first eight months of her life, Emma endured a total of four heart catheters, an open-heart surgery she was given a 50 percent chance of surviving, and two abdominal surgeries that resulted in placement of a drainage tube and gastronomy-button to allow her to be fed through the stomach.
(From left) Emma at 11 months wearing a helmet to help reshape her head topped off with a hat from Disney World from an uncle; Emma's first Easter in a fancy butterfly dress at 7 months with mom and dad; and Emma listening to music on the iPhone at age 2.
Seeing Emma, now at 4 years old, one would never have doubted for a moment that she would overcome all the obstacles in her path. She’s a smart, happy, vibrant girl. She attends therapy at Pediatrics Plus, where she’s eager to learn and develop. Like any typical kid her age, she likes music and singing. She laughs along to “Little Einsteins” and plays with toys while mom keeps a close watch.
Jerilyn’s life is devoted to Emma. In a typical day, Emma’s morning medical routine can last up to two hours, then she receives a series of respiratory treatments throughout the day. Jerilyn spends much of her time on phone calls with doctors, insurance companies and pharmacists or researching new medications or devices introduced into Emma’s routine.
“I’m just so worn out at the end of our day. Sometimes I just want to be a mom. I want to be able to wake up my child in the morning and snuggle and play. There are so many things that parents take for granted like babies being on their belly, or taking a pacifier or eating baby food. There are all these little things that we missed out on. Since I’m around Emma the most, that means I also get to do all the hard stuff, like daily hormone shots. It’s hard on the parent to constantly be the bad guy.”
The family finally caught a break when they started Emma at Pediatrics Plus. “She started therapy and school at Pediatrics Plus and they saved my life. After two years of staying home with her and never getting a break, starting school there gave me a chance to do something besides think about Emma, and I really needed that mental break. I feel fine leaving her there. The nurses love her, and I know she’s being well taken care of,” Jerilyn said.
Since her December health scare, Emma is on the mend and her immune system is regaining strength daily, which gives mom and dad time to resume fundraising for a new project the whole family is excited about.
“Kenny and I are really big into advocacy and education. We serve on the [ACH] Cardiovascular Intensive Care Unit advisory board, and are always looking to raise awareness,” Jerilyn said.
The couple was looking for a bigger project when they met Terry Hartwick, director of North Little Rock Parks and Recreation. Hartwick had wanted to build an inclusive playground in North Little Rock for some time, and reached out to the Wassons to collaborate on the idea. “This park is special and something this city needs desperately. It’s for everyone—it’s for Emma, and it’s for the parent in a wheelchair who can’t take their kid to a playground. It’s something we can all use. I had ideas for a playground, and then I met Emma and the idea just came together. I melted when I met her,” Hartwick said.
Hartwick aims to open One Heart Park at Burns Park in North Little Rock in May, and is confident they will meet their fundraising goal of $250,000. Fundraising has been an ongoing effort. Last summer a family-friendly concert was held in Burns Park and raised $20,000. The city of North Little Rock has donated money, and Hartwick has revived the Downtown Tip Off Club, a weekly sports-themed speaking event, that will donate proceeds to the playground.
“This playground will be inclusive. It’s not just for kids, the goal is to meet all generations. There will be wheelchair-accessible ramps and rubber flooring. It will be great for people with autism who have sensory needs. It will also be perfectly enjoyable for any typical kid. It will be so great to see all kids playing side by side,” Jerilyn said.
To support One Heart Park, contact North Little Rock Parks and Recreation at 501-791-8538 or email firstname.lastname@example.org.