Navigating Life's Journey: Katelyn's Spina Bifida Story with Shriners Children's

Katelyn is fiercely independent. Since she was born, she has always been a go-getter.

She loves singing and dancing, and has been a cheerleader since she was 5 – all in a wheelchair.

When she was 24 weeks pregnant, Katelyn’s mom, Haydee, was told that her daughter would be born with spina bifida, and needed additional ultrasounds to confirm the diagnosis. Spina bifida is a condition that affects the spine and is usually apparent at birth. This neural tube defect can happen anywhere along the spine if the neural tube does not close all the way. When the neural tube does not close completely, the backbone that protects the spinal cord does not form and close up as it should. This often results in damage to the spinal cord and nerves.

Finding Hope at Shriners Children’s

The same month they were going to have the ultrasound done, Haydee saw a television special that Shriners Children’s produced about children living with spina bifida. Haydee knew very little about the condition and found it fascinating. By chance, having seen this special, she knew what it was.

“No one in my family knew about it,” she said. “The timing of seeing the special couldn’t have been more perfect.”

Haydee continued to get routine checkups once every two to three weeks to see how Katelyn was developing. They couldn’t see how low or severe the opening was, but kept monitoring mom and baby. They told Haydee the birth would be a C-section.

“She was a big trooper, a very determined baby, from the moment she was born,” said Haydee. “They said she would need to spend one month in the NICU, but it ended up only being 14 days after surgery, since she was eating well.”