At 18 years old, Katherine Whitlock is a recent graduate of Bulloch Academy, and an accomplished dancer. She’s been accepted at Florida State University, where she will begin classes this fall. But she is also a fighter — a fighter who has battled against spina bifida occulta — and is winning.
Katherine was born in November 2004 in Chattanooga, Tennessee. Together with her mother, Heather Whitlock, and then 2-year-old sister Ansley, the family called the city home while dad, Dr. Austin Whitlock, completed his residency.
Heather remembers her pregnancy with Katherine to be normal. Doctors did a triple screen blood test to determine if there were any birth defects, but due to a mix-up in the lab, the test wasn’t run correctly, and by the time the results were back, the window had passed. The test should be completed between 16 and 20 weeks, and since that time had passed, it couldn’t be redone.
“Because we’d had a prior pregnancy and everything had been fine with her, the doctors weren’t too concerned,” Heather said. “We didn’t have any family history of anything that we knew of, so they really didn’t think anything about it. So we didn’t know there was anything wrong until she was born.”
After the birth, Heather recalled hearing the OB-GYN call for the Neonatal Intensive Care Unit. So she knew something was wrong.
“I saw Austin’s face change, then my father-in-law, who is a surgeon, ran into the room, and I could tell by the looks on both of their faces that something was wrong,” she said.
Katherine was born with a small sack of fluid on her backside, and they later discovered that she had a hole running from where her spinal column was located out to her back, so the spinal fluid had sort of been pushed out, and had been caught under the skin. This had developed into a small bulge of spinal fluid. She also had a sacral dimple, which Heather says was also a sign that something was going on.
Doctors ordered an ultrasound when Katherine was just 2 days old, and this showed that the spine had not formed completely. She then underwent an MRI, which required her being put to sleep, at just 4 days old. This gave them even more information.
Katherine was born without 3 and ½ of her vertebrae, and her spinal cord was tethered; so instead of it free floating in her back, it was attached near her coccyx, so her spine was being stretched and causing nerve damage.
At this point, Austin’s residency director helped the couple reach out to pediatric neurosurgeons across the country, seeking the best doctor to perform the needed surgery for their newborn.
“There were only a few at that time who would do surgery on an infant that age. Now they do in-utero surgery. Now if they know it’s spina bifida, they can do surgery on the baby while still in the mom’s womb. They didn’t do that then,” Heather said.
Their search led them to pediatric neurosurgeon Dr. Timothy Mapstone at Children’s Healthcare of Atlanta, who agreed to see her. The family made the trek to Atlanta to see him the week of Thanksgiving, when Katherine was just 3 weeks old.
Mapstone said Katherine needed to have a spinal detethering surgery, and although he said that the longer they waited the greater risk there was of damage, he advised the family wait until she gained a bit of weight, as Katherine had barely weighed 6 pounds at birth.
So when she was 9 weeks old, Mapstone fixed the hole that ran to her back and detethered her spine. He had to remove two more vertebras in order to do so.
Heather says that during those first few years, Katherine was very delayed. She couldn’t sit upright like most babies do, and she didn’t crawl — instead, she “Army rolled” across the floor. The Whitlocks took their baby girl to physical and occupational therapy to help her develop and strengthen the muscles she needed to help her learn to stand and take her first steps.
Katherine had significant weakness on her left side, and Heather says that the spinal cord tethering had caused nerve damage from her waist down, in addition to impacting her kidneys and bladder.
“Austin worked with her every single evening when he got home. He was either working on gross motor skills with her in the yard, or he would have her walk up and down the stairs, and he would hold the right foot down to make her use the left side,” Heather said, “to try to force her to work on that side.”
Katherine finally took her first steps at 18 months old. She is well aware that her life could have been very different. She wasn’t expected to walk, and instead was expected to spend her life in a wheelchair.
“I defied those odds,” she said. “I started walking, a lot later than most kids, through lots of years of physical and occupational therapy.”
As she grew a bit older, the bright and determined little girl watched everything her older sister Ansley did, and she was determined to copy her sister’s every move. She soon noticed that Big Sister was attending ballet classes, so she began to ask to attend as well.
Katherine’s orthopedic doctor at the time thought that ballet would be a great activity for her because it’s a strengthening exercise. He didn’t see any harm in it, Heather said.
“Katherine would never be able to play contact sports. But ballet is not a contact sport, and we felt it would definitely increase her core, which will help her in standing, because she doesn’t have all the bones that you and I have to support herself,” Heather said.
The Whitlocks talked to Shay Morgan, owner of Statesboro School of Dance, who they said was quite nervous about taking 3-year-old Katherine on as a student, because of her condition.
But a year later, they were able to convince Morgan to reconsider, and Katherine began to take classes.
“She was kind of scared to take me on at first, understandably,” Katherine said. “She had never had a child with that condition before. I was able to do what everyone else did, but she kept me on the side, because she was afraid that if someone ran into me I could possibly become paralyzed.”
Katherine worked hard during those early years, pushing herself to become more flexible and increase her strength.
“I knew I had to push myself harder. I was not flexible at all. My left side was so weak. So I began stretching at home every night, and I think that actually made me a stronger dancer,” she said.
Katherine has come to love dance and calls it her escape.
“When I’m dancing, all I can think about is the technique and just working to become a better dancer. I just feel so beautiful when I’m dancing and I don’t have to think about anything else going on,” she said.
Katherine has also studied jazz, tap, modern, contemporary and West African, but she says ballet is definitely her favorite.
“I feel like in ballet, there’s a very specific look you’re trying to achieve, and that always gives me something to work harder at. There’s always something to perfect in ballet, so I feel like it’s always pushing me. I’m never content with how I’m doing,” she said.
She says her greatest challenges in dance over the years have been flexibility and no strength on her left side.
“All the other little girls could do their splits, so I would go home and try to lengthen my splits, which did not work,” she said, with a little giggle.
But she didn’t give up. And her parents have definitely seen the effect that her determination and hard work have produced.
“It has given her incredible grace and poise. It has taught her that through hard work and determination, she can do whatever she wants,” Heather said of ballet. “She is a fighter for sure; she will not give up on anything. It has taught her goal setting and time management. Dance has been an incredible blessing in her life, for sure. I don’t think she’d be where she is today physically without it. It helped her tremendously.”
Heather added that dance has helped her daughter with standing and walking, and that she “can’t imagine Katherine without it at this point.”
“I fell in love with it,” Katherine said of ballet, “and I’m still dancing today. I plan on dancing professionally.”
Katherine says that she decided at 16 that she wants to dance for the rest of her life. She spent the first semester of her senior year auditioning in places like Utah, Texas and Florida.
“My dream school was Florida State, and I ended up making it into their program,” Katherine said. “They are a Top 10 dance school, so that is where I will be attending in the fall as a dance major.”
Katherine plans on dancing in a company after she finishes college, and hopes that after doing that for a few years, she will open her own dance studio.
In the dance program at FSU, Katherine will be training from 8 a.m. to 5 p.m., and then be in rehearsals after that — so each day will be a full one. She will also take dance history, kinesiology, Pilates and other dance-related academic classes.
What does Katherine think her biggest challenge at college will be?
“I think definitely it will be that it will be a lot more dancing than I’m used to, so it will definitely be something to get used to, but I’m excited to be pushed in that way,” she said.
Katherine says she couldn’t have come so far without the support of her parents, which she says has always been amazing. She says her parents have always openly discussed things with her; nothing about her health issue was ever hidden from her.
“I always knew that I couldn’t let people touch my back, that I could be hurt,” she said, adding that her mom would come to her pre-K classes and explain things to the other children that they had to be careful with Katherine. “They were definitely protective, but they also let me do stuff on my own. They definitely let me figure things out on my own, but they were always concerned, asking how my back was feeling.”
As for her prognosis, mom Heather says there was always a possibility that the spinal cord could retether (25% chance), and Katherine has had regular MRIs to check that. But now that she has reached her full adult height, her doctors say she’s likely out of the woods for that happening.
“She should be fine, as far as we know, for the rest of her life,” Heather said.
Heather says she and her husband worry about Katherine as she ages, thinking that her condition may impact her later in life. And as she heads to college, Heather is a bit concerned for her daughter. But she also says she feels good about the choice to attend FSU.
“I feel at peace with her decision to go to FSU,” she said. “We saw many wonderful dance programs throughout the country, but FSU has this conditioning studio with all kinds of equipment, Pilates equipment, they have every piece of equipment, and they take conditioning classes daily as part of their class structure.”
She says that Katherine did a summer intensive program last summer at FSU for two weeks, and because of their conditioning program, her daughter didn’t hurt even once. She’s confident that they will be able to work with Katherine and tailor a specific program for her to keep her body strong and in the best condition possible.
“It’s also a small program with a family atmosphere,” she said. “So I’m very excited and thrilled for her.”
Katherine calls herself very lucky to be living out her dreams, and she’s excited to be heading off to college.
For Mom, it’s very bittersweet. She has always stood backstage, watching her daughter dance, and helping her with costumes. Now, she will have to watch Katherine from a greater distance. She gets teary just talking about it.
“It’s very emotional for me to stand on the side and watch her,” Heather said of seeing Katherine dance. “I still see the little baby who struggled to even stand. To see her out there in a lead role, dancing and knowing that she’s going to go off to one of the top dance programs in the country, it’s an absolute prayer answered. All I could hope was that she would lead a normal life, when we found out her diagnosis, and she has far surpassed any of our dreams. We’re very, very blessed.”