Siblings cope with spina bifida

In October, the Ashbys had a ramp built and installed at their home by an all-female crew from Central Texas Medical Center (CTMC) called “Tough as Nails with a Servant’s Heart.” (Courtesy Photo)

by KIM HILSENBECK

When Nicole Ashby was pregnant with her daughter Brianna, she found out her baby had myelomeningocele spina bifida – a congenital malformation where the spinal cord is unprotected inside the vertebral column. Brianna also had hydrocephalus, or fluid on the brain.

With the severity of the baby’s condition in utero, Ashby said some doctors recommended aborting the fetus.

“They said she would never walk and would have no quality of life,” she said. “I chose not to abort.”

Ashby said it was a rough time for her and her husband, Brian, who live in San Marcos. They already had a little girl who was about a year old.

“Brianna had surgery the day after she was born to relieve the pressure from the fluid. She was in the NICU for two weeks,” she said.

She and her husband worried every day, she said.

But Brianna, according to her mom, was not going down without a fight. The doctors who said she would never walk must have been surprised to see that Brianna, 9, not only walks, but does so without any orthopedic assistance.

Chelsea, 3 and her sister Brianna, 9, Ashby are very happy with the new ramp at their San Marcos home. Both girls were born with spina bifida, a condition that affects the spinal column and can cause paralysis. (Courtesy Photo)

“We had her in physical therapy and she walks just fine,” Ashby said.

While Brianna has had some issues with her bladder, overall, Ashby said she is in good health.

Six years later, a third child came along, another girl. She also has myelomeningocele spina bifida, which Ashby said is very unusual.

“We’re one of the only families with biological siblings with spina bifida,” Ashby said.

But Chelsea, 3, had more health issues than her sister Brianna.

“Her spina bifida was up one vertabrae higher than Brianna’s,” Ashby said. “The higher up the spinal column, the more paralysis.”

She was also born with hip dysplasia, causing her additional problems.

“From the knees down, her legs are underdeveloped,” Ashby said. “She can’t wiggle her toes.”

Chelsea also has issues with her bladder and will soon be on medication.

She is now in a Head Start program at a San Marcos elementary school. She uses a walker and sometimes a wheel chair, depending on the distance involved in getting around.

It’s been rough on the Ashbys, but Nicole said she and her husband have been together 13 years.

“We beat the odds,” she said. “We are each other’s support system. And grandma picked up a lot of the slack, especially with our first daughter, which we really appreciate.”

In October, the Ashbys had a ramp built and installed at their home by an all-female crew from Central Texas Medical Center (CTMC). The crew was part of CTMC’s “Tough as Nails with a Servant’s Heart” program to raise awareness about breast cancer; they all wore pink shirts as they constructed the ramp. CTMC has been involved with ramp building for about a year, through Texas Ramps’ Hays County Branch.

The ramp allows Chelsea a new-found freedom; she can get out and go all on her own.

“She doesn’t have to be carried outside anymore,” said a grateful Ashby. “It’s made a huge difference in her life and ours.”

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