Bent but not broken.
That describes her back.
That describes her spirit.
That describes Effie Ward, a fifth-grader at Creekside School in Harris County.
A routine doctor’s appointment last year, when she wasn’t even supposed to be screened, identified her scoliosis, which led to the discovery that she needed brain surgery. But with strong faith and family, this 10-year-old girl has persevered through the medical treatment. And, despite having to wear a back brace for 22 hours per day, she has become one of the best pre-high school runners in the Columbus area.
“You can do anything through Christ,” Effie said.
So, on Christmas, it’s a fitting time to tell her inspirational story.
Effie’s mother, Julie, is a midwife at Piedmont Columbus Regional. Her father, Matt, is the farm manager at TurnTime Farms in Ellerslie. She has two brothers: Carson, a seventh-grader at Harris County Carver Middle School, and Cullen, a fourth-grader, at Pine Ridge Elementary School.
Born 5½ weeks premature, Effie was cross-eyed and severely farsighted. She got eyeglasses when she was 2.
“Everybody wants a perfect child with no issues to face,” Julie said. “. . . She’s had a little bit more anxiety. She’s had to work harder in school.”
In October 2017, Julie took Effie and her brothers to their pediatrician for a wellness check.
The doctor did a routine scoliosis screening on Carson. His siblings were too young for that, but they thought it looked like fun.
Cullen hollered, “I want to be screened, too!”
Effie interjected, “Me, too!”
So when it was Effie’s turn, Julie was sitting in a chair in front of her. The mother saw her daughter’s lopsided shoulders and thought she was goofing around.
“Effie, quit being so silly,” Julie told her. “Stand up straight.”
“I am standing up straight up,” Effie replied.
In hindsight, that was a blessed moment, the Wards believe.
“Thank God,” Julie said. “It was such a God thing.”
X-rays later that day confirmed it: Effie has a curved spine.
“She’s going to be fine,” Julie thought. “We’re going to get a brace, and we’re going to push through this. We’re going to face this head on.”
Julie also thought, “As a midwife, as a medical person, do you know how guilty I felt? . . . I mean, as much as I’ve seen her and ran with her and bathed her and things like that, I can’t believe that I never saw it. And now, I look at her and I can’t not see it.”
During the car ride home from an Atlanta orthopedist’s office, as Julie merged into traffic, she got a phone call from the doctor.
Effie’s MRI was abnormal.
Her brain had a Chiari malformation, when the lower part of the brain herniates through the skull and into the spinal canal. That caused syringomyelia, an alarming amount of fluid buildup in the spinal cord. The dilated spinal canal weakened the muscles along her spine, which caused the curvature.
Julie asked the doctor, “What are we facing here?”
The doctor said Effie needed to have brain surgery within two weeks.
Effie overheard the conversation on the Bluetooth in the car. When she heard the “surgery” word, Effie started “balling my eyes out,” she recalled “. . . It was really scary.”
“She was beside herself,” Julie said. “. . . I’m trying to console her, and there’s traffic, and I’m trying to keep it together.”
Julie explained the urgency.
“She was like a walking time bomb,” Julie said. “. . . That fluid left untreated would have caused irreversible spinal cord damage.”
The night before the Nov. 6, 2017, surgery at Children’s Healthcare of Atlanta, thinking about the operation was “just terrifying,” Julie said. She wondered whether Effie would be able to run again and have the same personality.
Effie thought “how nervous I was going to be that day, just what’s going to happen, if they’re going to do it right. Are they going to mess up? A lot of questions.”
Questions such as the wonderful one Effie asked Julie five days before the surgery. Julie recalled the dialogue in her blog.
Effie: “Mama, you know what would be really cool?”
Julie: “What, Sweetie?”
Effie: “If, during surgery, I could go up to Heaven, look around and then come back.”
Julie (fighting back tears): “Effie, I’d rather you not.”
Julie thought to herself, “What do you say to that? How do you respond? I could barely speak, so I just squeezed her hand.”
Matt and Julie had accompanied Effie into the operating room for her eye surgery when she was 4, so they figured they would be allowed to this time as well.
They were wrong.
Watching their daughter being rolled away from them and into the operating room, Julie said, was “the hardest time for me and my husband ever in our life.”
Effie said, “It was really hard. I was crying a lot. One more hug. One more kiss.”
Even her doll named Emily couldn’t keep her calm. Effie still was crying when a nurse “put the mask on me” before the surgery.
During the operation, a surgeon cut a hole, about the size of a 50-cent piece, in the base of her skull to help the spinal fluid exchange.
“We just had no idea,” Julie said. “It wound up being a more urgent thing. . . . Left undetected, I shudder at the potential damage that could have occurred.”
The operation, performed by neurosurgeon Dr. Barunashish Brahma, was successful.
Dr. Joshua Murphy, a pediatric orthopedic and spine surgeon at Children’s Healthcare of Atlanta, also is involved in Chloe’s medical care. He told the Ledger-Enquirer in an email, “In terms of her Chiari malformation, there are a variety of symptoms and neurological changes that can occur if left untreated. These include neck pain, unsteady gait, numbness and tingling in her hands and feet, vision problems, weakness, and even difficulty breathing. Fortunately, her surgery went well and she is symptom free.”
Dr. Brahma gave Effie one permanent post-surgery limitation: No jumping on a trampoline.
“She would like to strangle him for that,” Julie said with a laugh.
Adding extra caution, Julie didn’t let Effie play softball this year.
And for six weeks after her surgery, Effie wasn’t allowed to run.
Julie borrowed a friend’s stroller big enough to fit Effie so she could join her mother on runs and get some fresh air. When she finally was allowed to run, Effie said, “I was so excited.”
Although it was 42 degrees that evening, Julie picked up Effie from a friend’s birthday party, and they ran in the parking lot of Pine Ridge Elementary School.
“We just ran a mile,” Julie said, “and she still smoked me.”
Life with the brace
Since last December, Effie has worn her back brace, which covers most of her torso, for 22 hours per day.
“It’s uncomfortable,” Effie said, “really uncomfortable. . . . Sometimes it can be really aggravating, especially at night.”
But when she focuses on her daily activities, “I just forget it’s on me,” she said. “It’s not as hard as you would think it would be.”
Effie had 43 measurements taken of her to customize the plastic brace’s fit. It gets tweaked at every checkup.
“If they add some padding or try to adjust based on how she looks on X-rays in the brace, then there’s always just more pressure on points,” Julie said. “She’s gotten a couple of rashes when they’ve done that.”
Although she wears the brace under her shirt, most of her friends know about it, Effie said. But sometimes, other kids wonder why “a big chunk of plastic is sticking out” of her shirt.
She can’t wear “skinny jeans” with the brace, so she opts for skirts and dresses. The brace makes her extra hot in the summer but helps keep her warm in the winter.
Effie decorates her brace with colorful stickers and glitter. The brace is fastened by straps. She can put it on and take it off by herself in about 10 seconds.
Julie notices Effie’s brace the most when she embraces her. The mother misses her daughter’s “squishy-soft” skin.
“That tactile touch and hugging and holding her close is part of what’s heart-wrenching to me,” Julie said.
So she likes to squeeze in some cuddle time whenever she can, like when Matt slept in a recliner while recovering from shoulder surgery. Effie took his spot in bed with Julie.
Around 5 a.m., Julie whispered to Effie, “Hey, do you want to take your brace off and snuggle for a minute?”
Effie’s wordless response could have filled a dictionary. She ripped off those straps, freed herself from that brace and rolled into her mother’s arms.
Effie calls it “freedom” when she is out of the brace. “It feels like I was in jail for like 100 years and finally broke out,” she said.
And that gives her incentive to run — because, whenever she runs, it’s always without her brace, and that physical activity counts as time in the brace because it still strengthens her core.
In the 12 months she has worn the brace, her curvature has lessened by about 10 degrees, but the upper curve of her spine is still 35-37 degrees and her lower curve is 22.
“The hope is that bracing will slow the curvature,” Julie said. “As she hits growth spurts, the risk for an increase in her curvature is greater.”
More than likely, Julie said, Effie will need surgery to place a rod in her spine when she’s 14, the age that a girl’s skeleton is considered mature.
“My hope for her is that she loves running so much,” Julie said, “that the hard work and determination it will take to get back to her best will be totally worth it to her.”
Effie said about the probability of another surgery, “Sometimes, when I really think about it, I’m nervous. But if I don’t really think about it, like I’m getting back surgery when I’m 14, it’s not bad.”
Dr. Murphy called Effie “a vibrant young lady.”
“Effie is the perfect example of someone who has continued to live her life and not allow her scoliosis or brace to change her goals,” he said. “. . . I would like for all of my patients to approach their care and life with the same vigor and energy as Effie. She is truly a joy to watch grow.”
Effie handles adversity “with a great attitude,” Julie said. “. . . It seems like she’s had all this poopy stuff that’s happened to her, but she’s the sweetest little soul.”
Running is prime example of Effie using that great attitude to produce successful resiliency.
Effie began running competitively a few years ago. In her first race, she won her age group and was the overall female winner at the 2016 Georgia Blueberry Festival 1-mile run in Julie’s hometown of Alma.
“It made me feel really good,” Effie said.
Asked what else she enjoys about running, Effie said, “I like how at the end I just feel really relaxed and calm.”
But she often is anxious at the starting line.
“She would be almost in tears, like, ‘I can’t do this. I can’t do this. I’m so nervous,’” Julie said.
Julie would tell her, “It’s just butterflies. It’s normal.”
“You have to talk her off her ledge,” Julie said. “Once she got going, she was fine.”
More than fine.
In local races this year, Effie has shined.
She won her age group at the Midtown Classic 5K in 23:36, the Woodruff Park 5K in 26:10 and the Columbus Roadrunners 4-miler in 34:42. She also was the third overall female finisher at the Aaron Cohn Middle School Bulldogs for a Cure 5K in 26:10 and the Firefighters MDA 5K in 26:00.
“That’s what’s crazy,” Julie said. “Even this last year, her confidence has soared so much.”
No matter how many times she sees it, Julie marvels at the scene as the runners gather at the starting line.
“She’s in the middle of this huge line of people,” Julie said, “and there’s this tiny girl right in the middle, ready, waiting on the buzzer to start. . . . You’ll see some people look at her occasionally like she’s going to be in the way, and she certainly holds her own.”
In fact, she often weaves around and zooms past some of those doubters.
During the Midtown Classic in April, about a half mile into the 5K, Julie recalled, “I couldn’t see her shirt anymore. She was gone. . . . I got to the end, and her time was like 23 ½ minutes, I was like, ‘Holy cow!’ She had passed all of those people and was at the finish line, waiting on me and cheering me on. It just blew me away.”
Not only did she win her age group, but Effie finished 18th out of 219 runners overall, including men and women.
Effie shares her joy and cherishes the challenge of running with her mom. They try to run 2-3 miles at least three times per week. They motivate each other.
“If she wasn’t really in the mood to run that day, I would push her,” Julie said. “If I was tired, didn’t feel like running, she would say, ‘No, no, no. We’ve got to go.’ So it was a good balance, and it’s come to be that there’s, in this season of my life, there’s probably not a lot of things higher on the list that I enjoy than going out and running with her..”
Effie said, “I love running with my mom.”
When they go for a run along a road or a trail, Julie asks Effie to “circle back” so she doesn’t get too far out of sight.
“She’ll always wind up getting a little bit ahead,” Julie said, “and she’ll smile.”
Julie figures that’s an apt metaphor for their relationship with God.
“I think God works a lot like that too,” Julie said. “. . . He’ll always circle back for us, even if we’re dragging a little bit behind.”
The Wards have drawn on their faith through this hardship.
“I think God has a plan for everything,” Julie said. “We just had to have faith that it would be fine.”
Effie told her mother, “I don’t know why this has to happen to me. I don’t know why it would have to happen to anybody, but I know that God’s got a reason for it. It’ll be OK.”
Hearing that from her daughter boosted the belief in Julie.
“She’s always had this spiritual connection that I couldn’t even explain,” Julie said. “We had to believe that it was going to be OK. It’s the only thing that can get you through, I think.”
Asked what plan God has for her, Effie said, “I’m not sure.”
Julie added, “To be determined.”
Doctors have told them that Effie can expect to live a normal adult life. Her ultimate goal is extraordinary: to run the marathon in the Olympics.
“My papa says he’s saving up money to get a ticket,” Effie said.
She likes long-distance running better than sprinting, Effie said, because “I like to see it as, ‘I still got all this way to go, but I have so much to see.’”
Julie added, “Just don’t give up, right? Just don’t quit.”
Effie continued, “If I could do brain surgery and not break a sweat afterwards, then I can do anything.”
“Well, I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me.”
She sometimes listens to it while running.
“It talks about how God’s never going to leave you,” Effie said. “He walks right beside you and tells you which way you’ve got to go.”
Whether she is running a race or going through a medical procedure, Effie said, “I know that God’s with me both times.”
Julie added, “One mile at a time, right?”
“Yeah,” Effie said.
Mark Rice, 706-576-6272, @MarkRiceLE.