Houston-area family raises awareness about 'Yellow-Out Day' and spina bifida

HOUSTON - Monday, October 25, is "Yellow-Out Day", a time to raise awareness about the rare condition of spina bifida. We caught up with a bubbly child who doesn't let it slow her down.

Kaylie Lingor's doctor says she had such a complicated case, there aren't many hospitals where she could have survived. However, she has an optimal outcome, thanks to her team of surgeons from UTHealth Houston and Children's Memorial Hermann Hospital.

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Five-year-old Kaylie has endured more surgeries in her young life than many adults, but she's such a happy well-adjusted child, it's hard to tell what she's been through. Kaylie loves playing with dolls and toys and hanging out with her loving sister, as well as her dogs. Her medical journey began before she was even born.

"We went to an ultrasound, and the ultrasound tech was like super quiet, that's when you know there's something wrong. So, they had sent us to another doctor and the other doctor said there's something wrong with the back called spina bifida, and we didn't know what that is," states Jessica, Kaylie's mother.

They soon found out that Kaylie would need surgery after birth, to repair her back. Her pediatric neurosurgeon with UTHealth Houston and Children's Memorial Hermann Hospital says they had to detach her spinal cord and protect the spinal fluid from leaking and from gaining dangerous bacteria. 

"To get the skin in such a large defect to heal our wonderful plastic surgery team comes in and finds muscle and thick fascial tissue which is very thick collagen and then skin to come over and heal over this defect," explains Dr. Manish N. Shah.

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Kaylie also suffered from dangerous fluid in her head that put pressure on her brain, so doctors had to also quickly address that condition, called hydrocephalus.

"Her forehead didn't fuse together. He went in and completely reconstructed her entire forehead, she looked like a completely different child," explains Jessica.

Kaylie is recently out of surgery to repair her club feet, so that she can crawl and get around more easily. She has scoliosis that's affecting her hips, so more surgery may be in her future. Plus, Kaylie only has one kidney and her family closely monitors her for seizures, but in most ways, Kaylie is just a busy, happy little girl, enjoying her kindergarten year.

Kaylie's mom does everything in her power to provide her precious daughter with a typical childhood. 

"We adjust things for her but not completely because she's got to learn how to do it in the real world," says Jessica. Kaylie has a modified wheelchair and bike, to make sure she can easily get around and still enjoy just being a kid! She recovered from the surgeries and has continued to be a bright light throughout it all. Her mom calls her sweet 'n sassy!

"Growing up around all the doctors and hospitals and nurses, anybody who's in scrubs, she loves them automatically," smiles Jessica.

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Dr. Shah says the feeling is mutual!

"She is a darling, just an absolute darling of our clinic and you know she's the face of UT Physicians, she's in our commercial, we love her that much, but she has the right spirit. We should all have such a spirit to be so happy and resilient," says Dr. Shah. He goes on to say that he believes Kaylie gets that amazing attitude from her parents and grandparents.

She already has high aspirations and wants to start playing wheelchair sports as soon as she can and become a Paralympian one day!  

For more information:  https://www.utphysicians.com