When an expecting mom went for her 17-week pregnancy checkup by herself, she thought she would surprise her husband with the gender of their baby. However, after finding out she was expecting a girl, she was blindsided by an additional reveal: Her baby had spina bifida.
Nickell Thomas, whose eldest child is a boy, recently shared with the Spina Bifida Association (SBA) about her journey of raising her now 8-year-old daughter, Taylor.
Thomas wrote that the ultrasound took over an hour, and she actually fell asleep. By the end of the appointment, she found out she was expecting a baby girl.
“I was super excited,” she wrote. “My grandmother had passed away earlier that year and we said we’re going to name our baby after her if it was a girl.”
To reveal the gender to her husband she bought an “It’s a girl” card and for her mother an “It’s a girl” balloon. When Thomas went to her mother’s house to pick up her son and share the good news, she got a call from her doctor.
“It felt like time stood still,” she said, adding that the doctor told her that her ultrasound had indicated “severe brain and spinal damage.”
Thomas’s baby girl had myelomeningocele, the most serious form of spina bifida, in which parts of the spinal cord and nerves develop outside of the body in a fluid-filled sac. Fearful that baby Taylor would have a poor quality of life, the doctor advised Thomas to consider a medical abortion.
“It was like all the air left my body,” Thomas said.
Desperate for information, Thomas “did the worst thing ever” and turned to Google. “It was like every picture that popped up confirmed what [the doctor] said,” she said.
But when Thomas shared the news with her husband after he returned from work, he lent a new perspective to their situation.
“I will never forget his simple words, ‘This doesn’t change anything, we still will love them,'” she recalled. “He was so sure and strong.”
Amid Thomas’s online research to learn more about her daughter’s condition, she happened across a blog about a little boy, named Grayson, with spina bifida. Taken with the boy’s “bright smile,” Thomas was reassured.
“I knew in that moment that we were going to be okay,” she said.
Myelomeningocele can cause loss of sensation, paralysis, and bowel and bladder problems, according to the American Academy of Orthopaedic Surgeons. Paralysis can lead to deformities of the legs, feet, and back, and most children with the condition use braces or wheelchairs.
Taylor has endured numerous stints in hospital and surgeries to improve her health and mobility, yet she hasn’t let her difference hold her back.
“I’m spina bifida strong,” Taylor, who runs her own nail polish business, proudly said in a video for 2020’s Spina Bifida Awareness Month.
“It’s not always easy, but I’m awesome, I’m loved, I’m supported,” Taylor added. “So what, I do stuff different. I get the job done. Nothing can get in my way.”
Taylor has braved bullies for being different but hasn’t let others damage her self-esteem.
“Despite all of the challenges Taylor faces, she is amazing and her smile can warm the coldest heart,” Thomas said.
Calling Taylor her “hero,” Thomas said, “This journey has not been easy, but I would do it all over again.”