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.”

Following her NICU stay, Katelyn was referred to Shriners Children’s Northern California, and she had her first appointment when she was 3 months old.

“Shriners Children’s has been a blessing for our family,” said Haydee. “They have seen her grow up. Katelyn hasn’t been anywhere for medical treatment but Shriners Children’s since she was a baby.”

“I love Shriners Children’s, I’m comfortable and familiar with the doctors and speaking up when I have questions,” said Katelyn.

During Katelyn’s visits, Shriners Children’s Northern California offered her everything in-house for her care. From orthopedic surgery, a wheelchair and social connections, her care team made sure she had the ability to live independently. They went above and beyond to offer her opportunities, invite her to events to help her get out, and network with kids that are like her – and she finds a big comfort in that.

“They always ask, ‘What does she need?’ ‘What does your family need?’ They’re always so accommodating and helpful, making sure we are well-connected for anything we need,” said Haydee. “Doctors recommended procedures they thought were best for her and talked us through them.”

Finding Ways to Adapt

Over the last 15 years of her life, Katelyn has undergone many treatments. When she was 9 months old, a MACE procedure was done so that she could flush herself out once a day. A Malone antegrade continence enema (MACE procedure), also called an appendicostomy, surgically creates a channel that allows an enema, or flush, to be given at the top of the colon instead of at the end through the rectum.

A year and a half ago, she got an RGO to gain the experience of walking. A reciprocating gait orthosis (RGO) allows the user to create reciprocal (forward and backward) movement of the legs, and to regulate their gait while walking. It is meant to assist those with paralysis of the lower trunk, hips and lower extremities to stand and walk. The hip dual-cable mechanism is designed so hip extension on one leg can assist hip flexion on the other leg, creating an energy-efficient gait. She doesn’t use it as much as she’d like to, but Katelyn said it’s an amazing opportunity to feel what it’s like to walk.

“They are still coming up with new tech, so I am very excited to try it out and see what they can do to help people with disabilities like mine to be able to walk,” she said.

Making Her Own Impact

In fifth grade, Katelyn started making bracelets to sell and raised $500 to donate to Shriners Children’s Northern California.

“I wanted to give back because I’ve always had a big love for Shriners Children’s and everything they’ve done for me,” she said.

Along with raising awareness for the hospital, Katelyn has been an active voice in her student body. She has been class president of her high school for the past three years, and uses this position to become involved with staff and students.

“I love to show that kids with disabilities can do anything – most kids underestimate people with disabilities,” she said.

One of Katelyn’s favorite things is advocating for other kids. One of the proudest moments in her high school career was pushing for disability-friendly fire safety precautions. The school installed a fire safety chair to help get students down the stairs safely in the event of a fire or fire drill.

“Sometimes schools don’t realize certain things could be an issue. I don’t want to leave my school knowing there is more I could have done for future students with disabilities,” she said. “I have brought awareness to Shriners Children’s, spina bifida, and kids with disabilities at my school.”

Looking to the Future

While finishing her high school career, Katelyn also looks forward to establishing a career after college. She likes volunteering at animal shelters, and wants to study to be a veterinary assistant. “A lot of animals are treated like kids with disabilities are treated,” she said. “They bring comfort, as long as they are being taken care of, and they don’t see me as any different.”

On top of being president of her class, Katelyn is also the president of a club, is a cheerleader, and is an active member of her community. Her dream school is UC Davis.

“As she is getting older, it’s difficult as parents, but she has been so independent since day one,” said Haydee. “Shriners Children’s has a process to prepare parents and it’s a much easier transition. They give options and assist with connections for who she’s going to see next. She’s not just ‘graduating’ from Shriners, they are making sure she has someone to follow up with her for next steps in care, what to expect and prepare for. It’s a ‘one stop shop.’ Shriners Children’s has connections for everything and are there to support.”