Spina Bifi-What?!

Boy on Radio Flyer vehicle

Who would’ve thought that a diagnosis of “permanently disabled” could look so adorable?

I lived 30+ years of my life without knowing anyone with spina bifida. How is that possible when it’s the most common permanently disabling birth defect?

The Diagnosis

An ultrasound during our third pregnancy revealed our child had Spina Bifida Myelomeningocele (“my-low-ma-ninja-seal”) and Hydrocephalus. Suddenly our world was turned upside down. We had two other beautiful, healthy young boys. How could this be?

The remainder of my pregnancy was scary—riddled with anxiety and fear and so many unknowns. On Oct. 3, 2012, we welcomed our third beautiful boy into our family, Colten.

This little man underwent more medical procedures, pokes, surgeries and tests in his first six months of life than the other four of us had probably undergone in our lifetimes, combined! It was a new world to us, and a very new normal.

Mom with newborn baby

Happy birthday, Colten!

What is Spina Bifida?

Spina bifida comes in four different forms, with myelomeningocele being the most severe.

This birth defect “happens” before some women even know they are pregnant. In the earliest stages of pregnancy, the edges of the neural plate begin to curl up toward each other to create the neural tube — a narrow sheath that closes to form the brain and spinal cord of the embryo. As the pregnancy progresses, the top of the tube becomes the brain and the rest becomes the spinal cord. This is usually completed by the 28th day of pregnancy (pregnancy tests usually detect a pregnancy around day 14). If there is an issue during this process, the fetus develops a neural tube defect, which among other things, could be spina bifida.

Other Questions

Sometimes, people hesitate to ask “taboo” questions about spina bifida. I figured I would take a few moments this October, Spina Bifida Awareness Month, to open up about some of them.

  • So it’s a disabling birth defect. How disabled?
    Because the defect can occur anywhere along the spine, the degree of disability depends first on where the lesion is. The higher up the spine, the more areas of the body are affected. The lower on the spine, the lower the impact.While many kids with spina bifida learn to walk—often with the assistance of braces, walkers, and/or forearm crutches—there are some who have absolutely no movement in their lower extremities at all, while there are some who walk with absolutely no bracing or assistance at all. Colten has a lesion of about L3/L4 (lumbar region of the spine). He has movement in his legs through his knees but no movement in his right calf/ankle or foot/toes. His left side has extremely limited and weak movement of the calf/ankle, but no movement of his toes at all. He has very weak hamstrings and glute (buttocks) muscles, and mostly uses his front hip flexors and quads to control his leg movement. As you can see, it doesn’t seem to stop him!
Little boy doing gymnastics

Colten loves doing gymnastics!

  • How long will someone with spina bifida live?
    Most people born with spina bifida today have a near-normal life expectancy. While they undergo countless surgeries and procedures throughout their lifetime, which could cause greater risk to their lives, they are expected to live full lives.
  • Doesn’t folic acid prevent spina bifida? If you take prenatal vitamins, are you guaranteed to not have a child with spina bifida?
    While folic acid doesn’t prevent spina bifida, it can decrease your chances a considerable amount. However, if you have a family history of neural tube defects, taking a higher dose of folic acid is strongly recommended and should be discussed with your doctor.
  • What about cognition?
    Most individuals with spina bifida are of average intelligence for their family, but there are a lot of things that can go into altering this though.A lot of people with spina bifida have a shunt in their brain to manage hydrocephalus (water in the brain). These shunts can fail (and they do fail!) and, if not treated in a timely manner, could cause brain damage. Repeat brain surgery with the shunt revisions could cause infections and brain damage. There are other medical implications that come with spina bifida that can cause problems. Hydrocephalus itself can lead to an increase in learning disabilities and executive function.But in general, people with spina bifida don’t have many cognition issues.
  • Is it difficult raising a child with spina bifida?
    We have three boys: 5, 3, and 2 years of age. They’re all difficult at different times for different reasons. As completely overwhelming as it can be in the beginning, or when medical complications arise, or when you’re just having one of those “I hate spina bifida days”, it’s not that much more difficult on a daily basis. Sure, I need to move my schedule around to fit in two or three therapy appointments every week plus sporadic doctor appointments.Day-to-day, our son does what most 2 year old boys like to do: play outside, make a mess while eating, play with his brothers, cuddle, read books, etc.It’s not easy raising any child. It’s certainly not easier raising a child with special needs. But once you find your “new normal”, you realize you can do it.
Little boy with his leg braces

Check out Colten’s brace progression.

– Kate Pojeta is the mother of three boys and owns her own website development/technology consulting company. She volunteers with the Parenting Program to pay forward some of the amazing kindness bestowed upon her own family by many volunteers around the time of Colten’s birth. You can learn more about the family’s adventures with spina bifida on their blog .


1 Response to “Spina Bifi-What?!”

  1. 1 Anonymous October 29, 2014 at 2:39 pm

    Colten, you are my hero! Your smile brightened my day! Kate you are a super hero mom! Thank you for sharing your inspiring story to help create awareness.

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