Five-year-old Kaylie Lingor, an irresistible social butterfly who loves chatting with everyone, flashes a megawatt smile that lights up every corner of a room.
“She has never been shy,” laughs her mom, Jessica.
The Lingor family, including Dad, Matt, and eight-year-old sister Kinley, appreciates all of life’s little moments and precious memories.
Before Kaylie was born, the Lingors learned that Kaylie would face tough challenges. “Right before Christmas, medical tests revealed Kaylie’s diagnosis of Spina Bifida and it was an intense holiday season while we tried to understand our new reality.”
Lindsay Crawford, M.D., an assistant professor in the Department of Orthopedic Surgery at McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth), has been an important part of the Lingor family since Kaylie was born.
“Dr. Crawford has been by our side from the beginning,” says Kaylie’s mom. “This is a tough road but we always have confidence there’s a great plan for Kaylie’s care.”
What is Spina Bifida?
Spina bifida is a rare birth defect where the spinal cord does not develop properly. The condition is a type of neural tube defect that can occur anywhere along the spine within the first 28 days of pregnancy.
The cause of Spina Bifida is unknown, but it can range from mild to severe. It is known as the “snowflake condition” because no two cases are the same.
Kaylie has the most severe form of Spina Bifida, called Myelomeningocele (Meningomyelocele). This means part of the spinal cord and nerves come through the open part of the spine, causing nerve damage.
“The complex care for spina bifida often requires a multi-disciplinary team of experts,” explains Dr. Crawford, who specializes in pediatric orthopedics and treats a variety of musculoskeletal issues and injuries, with an emphasis on spinal deformity and scoliosis. “Our team of specialists at UT Physicians works with patients on a customized care plan focused on every child’s quality of life. Because of Kaylie’s needs, our Spina Bifida clinic is perfect for her to be able to see our specialists in pediatric neurosurgery, pediatric urology, pediatric orthopedics, physical medicine and rehabilitation, and general pediatrics, all in one setting. With that smile of hers that lights up a room, we love to see her in clinic.”
“Kaylie’s medical care team is like family,” says Jessica, whose warm personality and non-stop sense of humor prove she can handle anything. “They are Kaylie’s buddies and she loves talking to them about everything.”
“Kaylie’s family is amazing,” explains Dr. Crawford. “They built everything in her bedroom to accommodate her needs.”
“Our life is very different from other families,” says Jessica, “and I realized early on I would need considerable patience to handle all of these issues. For example, Kaylie has worn splints or casts since she was a few days old.”
Jessica remembers how heavy the casts were when Kaylie was young. “Kaylie learned to crawl wearing casts from her toes to her thighs, but she’s always been a little Houdini and somehow could get out of those casts by herself.”
“Kaylie has undergone casting and surgery for both feet,” adds Dr. Crawford. “One was a clubfoot and the other a congenital vertical talus. I also follow her for congenital scoliosis and hip dysplasia.”
Now Kaylie makes her splints fun by decorating the stretchy wraps around them. “She loves picking different colors or prints and the UT medical team surprised her with purple sparkly ones to wear,” says Jessica.
Kaylie still crawls and wears splints at night, but she doesn’t wear them to school. She finished Pre-K and is excited to go to kindergarten this fall.
There will be more tendon-release surgeries for Kaylie and she may need hip reconstruction. “We always treat her like a normal kid and she likes that. Her goal is to walk someday and we are optimistic,” says Jessica.
“Even at such a young age, Kaylie is a great representative for the Spina Bifida community,” explains Dr. Crawford. “Her sweet smile adds to her star quality.”