NEWTON, Kan. (KSNW) – Taylor Lewis learned at her 20-week anatomy scan that something was amiss with her growing baby, future daughter, Annie.
Annie has spina bifida, a congenital disability when the spine and spinal cord don’t form properly. Approximately 166,000 individuals in the United States have the condition, according to the Spina Bifida Association.
Taylor and a growing Annie underwent fetal surgery when Taylor was 26 weeks pregnant.
“They opened me up, and they pulled out my uterus, and cut that open and pulled her little butt up. So it’s called a “butt day,” she has two birthdays because technically her butt was exposed,” Taylor explains.
A 26-weeks-gestation Annie was pulled from Taylor and repairs were made to her spine. Skin from Annie’s back was pulled around to cover the incisions in her spinal cord. After that, Taylor was on an epidural and not allowed to move for several days.
Annie was born via C-section at 37 weeks.
“We were blessed. Annie’s location of the spina bifida was very low on her spine, which has an increased chance of being able to walk,” father, Tanner, explains.
Now two years old, Annie walks without a walker, goes to physical therapy, and is working on transitioning to new braces. Cognitively, the toddler’s vocabulary is beyond kids of her same age.
“She’s very opinionated,” Taylor said.
Taylor, who says she is blessed with a support system made up of friends, family and church friends, advises other parents with children who have specific needs to ask for help.
“It’s important to have people to lean on,” Tanner said.
The Lewises also have a son, Harrison, who has Moyamoya, a rare blood vessel disorder.
Expectant parent’s guide: You’ve been told you’re having a baby with spina bifida. What next?
Can spina bifida be detected before birth? (via Spina Bifida Association)
Yes. There are three tests, but it is important to remember that no medical test is perfect, and the results are not always 100 percent accurate. Spina bifida can be detected in utero by one of the following tests:
- A blood test during the 16th to 18th weeks of pregnancy. This is called the alpha-fetoprotein (AFP screening test). This test is higher in about 75–80 percent of women who have a fetus with spina bifida.
- An ultrasound of the fetus. This is also called a sonogram and can show signs of spina bifida such as the open spine.
- A test where a small amount of the fluid from the womb is taken through a thin needle. This is called maternal amniocentesis and can be used to look at protein levels.