Nicole found out that her daughter had Spina Bifida when she was 16 weeks pregnant. After a lot of research, Nicole decided surgery in utero would give her daughter a head start at beating this diagnosis. Years later her baby, Piper, has overcome overwhelming odds, some thanks to the in utero surgery and in another part to her unconquerable spirit. Piper’s condition has forged resilience with her siblings and strengthened bonds within her family.

Fetal surgery on a baby with Spina Bifida

When the doctors told Nicole her baby would have Spina Bifida, she was given some options, she could terminate the fetus, have surgery in utero, or have her child go through surgery soon after birth. She made an appointment with a Perinatologist, “a high-risk OBGYN” and after a lot of research, Nicole chose to have surgery in utero to help improve Piper’s quality of life. There are only three hospitals in the United States that do this type of surgery, and it has to be done before the mother is 24 weeks pregnant.

If the in utero surgery went well her baby would not need a shunt to help with hydrocephalus, could have greater mobility, and a reversal of brain malformation.

Piper was born 30 weeks into the pregnancy. The surgery was a success, Piper has been more mobile than doctors anticipated and has also had a “reversal of brain malformation.”

As Piper has grown, Nicole has been filled with gratitude. “I feel like I take nothing for granted,” Nicole said. “When she hits milestones that other kids hit without any additional help, we don’t take that for granted.”

“My own health, my own abilities, I see in a different light. I am so grateful for the things that I can do, and I don’t take them for granted anymore. Seeing her accomplish things makes me feel such great joy because I know for her, she has to work hard for a lot of the things that some kids can do without any help. To see her accomplish things on her own brings me so much happiness.”

Effect on Family of Having a Child with Spina Bifida

Unfortunately, the pressures of having a child with a disability were stress on Nicole’s marriage and she was divorced soon after Piper was born. After Piper got a few years older, Nicole married a man named Adam. Adam’s kids adore Piper, when they are at their mom’s house, they will ask when they get to see Piper again. She is “like the light, that’s all they talk about,” Adam said. “They’re really excited. It’s just remarkable the impact that one person can have.”

There are many good things that come from Piper’s disability. Since Adam’s kids have gotten to know Piper, they are better able to get along with all types of children at school, no matter their background.

Having a Child with Spina Bifida is Both Eye-Opening and Joyful

Nicole tells parents of children with Spina Bifida to do a lot of research. Since there are many children with this disability, there are many parents and who understand what they are going through as they raise their kids.

Now every step Piper takes is one step further in her growth, no matter how small. In fact, doctors said she would never able to walk without a walker, but Piper has now learned to both walk and run by herself.

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