My Daughter's Spina Bifida Birth Defect Is Not A Tragedy, It's Just A Part Of Our Life With Her

More than anything, I want you to know that disabilities like Spina Bifida are simply another way of being a person in the world.
Publish date:
October 29, 2014
parenting, disabilities, Spina Bifida

My 27th birthday was definitely the worst I’ve ever had. It started out exciting, with an appointment for the “big ultrasound” that would finally let us know if the twins I’d been carrying for about 18 weeks were boys or girls, and we’d invited my parents to join us as we found out.

Instead of finalizing names and enjoying a celebratory lunch, that appointment ended in tears, as I tried to control my sobbing long enough for the high-risk OB to get a good look at the baby we then knew only as Baby B, after the tech said some devastating words: “We see some abnormalities with your baby’s head and spine, and the doctor wants to take a closer look.” We left the office that day newly aware of two things: both of our babies were girls, and one of them had Spina Bifida.

I had no idea what Spina Bifida was before that day. It turns out it’s the most common permanently disabling birth defect, and if you’ve ever wondered why doctors and the March of Dimes are always harping about women of childbearing age getting enough folic acid, Spina Bifida is probably why. Spina Bifida is known as a neural tube defect, which means that the part of a fetus that becomes a baby’s brain and spine, the neural tube, fails to close properly. There are different types of Spina Bifida based on the size, type, and location of this opening, which is usually called a lesion. And this defect happens so early on in a pregnancy, many women don’t even yet know they are pregnant at the time, which is why doctors urge women of childbearing age to take a folic acid supplement (which can help prevent many but not all cases of SB) even before they decide to become pregnant, because by the time you’ve seen a plus sign on a pee stick and started popping prenatals, it’s too late to prevent neural tube defects.

The size and location of this lesion can vary, as well as the extent to which the lesion causes nerve damage, and the ways in which people with Spina Bifida are affected varies, too. Generally, it causes some degree of disability in the lower body which can affect mobility and also the bladder and bowels. Many people with Spina Bifida use things like braces, crutches, walkers, and wheelchairs to get around, and many need things like catheters and surgeries to help with continence. The spinal defect also frequently causes cerebral spinal fluid to build up in the brain, known as hydrocephalus. This fluid on the brain is what the ultrasound tech first noticed that alerted her that something was abnormal with “Baby B,” as well as what is called a “lemon sign,” for the elongated head shape caused by this fluid. Many people with hydrocephalus have a shunt implanted to drain this fluid from the head, preventing it from damaging the brain.

But as we sat in that ultrasound room, I didn’t know if Spina Bifida meant my baby would ever speak or walk or how she would live. I didn’t know what anyone with Spina Bifida looked like. I felt scared of what we were facing.

Now, almost three years later, there are a few things I wish I could whisper to that worried newly-27-year-old who had just aged more in five minutes than in all previous birthdays. I wish I could show her a picture of my beautiful Claire, with her loopy blonde curls and deep belly laugh. Spina Bifida is part of her, always has been, and always will be, but it is not all of her.

More than anything, I want Claire -- and you -- to know that disabilities like Spina Bifida are just another way of being a person in the world. Claire is whole and complete, just as she is. Her life is not tragic. She’s not fighting Spina Bifida because she’s not in a battle against the body she has always had. Every day is not a struggle. Every achievement is not a victory struck against Spina Bifida, and every setback is not a cause for pity. She’s just a little girl, learning to navigate the world in the only body she’s ever known, testing out the limits of her potential just like anyone else.

While I thought having one twin with a disability and one twin without would only serve to make Claire seem more disabled, the truth is, as we raise Etta and Claire side by side, I mostly just see how they’re really not all that different in the ways that really count, and how they’re simultaneously different in pretty much every possible way -- not because of Spina Bifida, but because they are fiercely themselves, complete individuals, twins or not.

When we first got our diagnosis, I thought SB would be this big, defining factor in our lives. That it would dominate our day-to-day experience, and change us in huge ways. And I guess sometimes that’s true. The birth experience was definitely different than most -- a C-section at 36 weeks to minimize the possibility of contractions damaging Claire’s exposed nerves, her being whisked away in a plastic box to a nearby children’s hospital almost immediately after so she could receive the surgery that would close up the opening on her spine, and, because of my own medical complications, me not getting to see her again until she was nine days old. Since then, she’s had one surgery at around age one, to put in a shunt to treat her hydrocephalus, which seemed much scarier (BRAIN SURGERY ON MY BABY!) than it turned out to be -- she took regular ibuprofen afterward and seemed instantly relieved, as if a massive headache had cleared up. She started crawling exactly a week later.

Our days are largely average and SB-drama-free. She goes to a developmental preschool where she receives speech therapy (largely for feeding-related issues, as she could quite happily talk your ear off), occupational therapy, and physical therapy, and it’s really not any different for our lives than it would be to drop off a typical child at daycare. She wears knee-high braces on both legs, which help her to walk. We use catheters to empty her bladder, which I had a hard time with for about a week, but now could do with my eyes closed.

She knows that “Mama, wanna snuggle?” are the three best words a mother could hear. She loves our cat and babies of all sorts, both living and doll. She’s got an obsession with Daniel Tiger. She’s pretty sure her name is Claire Bear, and never refers to herself as just Claire. She’s a born comedian and is constantly testing out toddler bits on me: “Is that funny, mama?” She tells me she wants to play soccer someday.

Spina Bifida is just part of our life. Sometimes it moves to the fore, when she’s got a fever and we’re wondering if her shunt is malfunctioning, or if she’s got a UTI, or when she’s asking to use the potty and we’re trying to explain to a two-year-old that potty training will look a little different for her than it does for her sister.

Other times, it’s relegated to the margins -- the reason we strap on braces and hold out a steadying hand, but never a reason not to play or laugh or love.

We’ve all come a long way since that dark day in a dim ultrasound room when we thought we were getting the worst news of our lives. Now we know what Spina Bifida looks like, and it turns out she’s beautiful. There’s really no telling what she’ll do someday, and I’d never bet against her.