Spina Bifida Awareness: What is Spina Bifida?

* I apologize for not doing this in a very timely manner. We have been sick and the baby has been, well, a baby.

“Spina bifida [meaning ‘split spine’] is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby’s brain and spinal cord and the tissues that enclose them. Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone. Spina bifida occurs in various forms of severity. When treatment for spina bifida is necessary, it’s done through surgery, although such treatment doesn’t always completely resolve the problem.” [MayoClinic.com]

Drawing of a baby born with Spina Bifida. [CDC.gov]

Drawing of a baby born with Spina Bifida.
[CDC.gov]

Spina Bifida is the most common permanently disabling birth defect in the United States.

Each year, about 1,500 babies are born with spina bifida

Can Spina Bifida be detected before birth?
Yes. There are three tests*.

  1. 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 % of women who have a fetus with Spina Bifida.
  2. An ultrasound of the fetus. This is also called a sonogram and can show signs of Spina Bifida such as the open spine.
  1. 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

There are three different types of Spina Bifida – Spina Bifida Occulta, Meningocele, and Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica.

Spina Bifida Occulta
It is often called “hidden Spina Bifida” because about 15 percent of healthy people have it and do not know it. Spina Bifida Occulta usually does not cause harm, and has no visible signs. The spinal cord and nerves are usually fine. People find out they have it after having an X-ray of their back. It is considered an incidental finding because the X-Ray is normally done for other reasons. However, in a small group of people with SBO, pain and neurological symptoms may occur. Tethered cord can be an insidious complication that requires investigation by a neurosurgeon.

Meningocele
A meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.

Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica
his is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. Seventy to ninety percent of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. Without treatment, a person’s head grows too big, and may have brain damage. Children who do not have Spina Bifida can also have this problem, so parents need to check with a doctor.

[SpinaBifidaAssociation.org]

Basically, all of that means that in different forms and different severities, the spinal cord does not fuse together and is usually open and exposed when the baby is born. A surgery is done to close the opening immediately after birth.

People with Spina Bifida also have hydrocephalus (water on the brain) due to the inability for spinal fluid to drain properly. Almost always, a shunt is surgically placed to help fluid drain properly.

As the child gets older, these problems translate into physical disability, as well as dyslexia and other kinds of intellectual difficulties.

The severity of the disability of a person with Spina Bifida tends to depend of the location of the defect. The higher the defect is on the spine, the more severe the disability, and the more functions it affects.

[disabled-world.com]

[disabled-world.com]

Physical disability ranges from being fairly unaffected, able to walk and get around without assistance, to needing braces, a walker, and/or a wheelchair. The nerves that are affected can also cause loss of sensation, poor circulation, and many times, incontinence. They can sometimes get blisters and sores on the skin, and almost always have a latex allergy.

Katie is, I think, somewhere in the middle of that spectrum. Though she uses a wheelchair now, like me, she didn’t always. She used to get around well with the assistance of a walker, and she has always worn braces. She started using a wheelchair around when she started high school, when walking more than a few meters became very painful to her knees, hips, and back.

I asked Kate to share some of her own knowledge and experiences of Spina Bifida. It was much more personal and helpful than anything I was able to find on a website.

This is what she shared 🙂 :

  • My SB is as between the L4 and L5 region of my spine (basically right above the base of the spine)
  • I have Myelomeningocele
  • Started using a chair regularly in 9th grade. Before that it was only for anywhere that would have meant a lot of walking (vacations, museums, zoo, mall, etc).
  • Everyone with SB has hydrocephalus
  • Most people with SB need a shunt implanted to drain the excess spinal fluid from the brain (hydrocephalus) (I thankfully did not)
  • Many will have multiple shunt revisions for malfunction shunts
  • Most use braces, crutches, or a chair
  • No one knows the cause of SB for sure but it is thought to be a combo of environmental and genetic. Lots of research is and has been done on the genetic side. Tends to happen more often in areas with a lot of farm land.
  • Nobody knew I had SB until I was born. My mom had no idea I didn’t move as much as I was supposed to. Because it was her first pregnancy and she had nothing to compare it to. Now they test for it.
  • Had my first surgery to close my back soon after birth
  • My parents were told I probably wouldn’t ever walk. I’ve apparently always like to prove people wrong. Tell me I can’t do something and I will do everything in my power to prove you wrong.
  • Depression and anxiety are very common in Spina Bifida
  • Bowel and bladder incontinence
  • Unemployment rate is in the 70% range
  • Starting at about 12 or 13 I started having pain especially in my knees and back. It continued to progress from there until I had constant back pain as well as frequent knee and hip pain.
  • Using my chair has also caused frequent wrist elbow and shoulder pain
  • My muscles especially the ones in my legs started twitching around the same time and I didn’t find out until I was 28 that that it was caused by tethered cord which should have been discovered when I was in my early teens but wasn’t. At this point the risks of the surgery to untether me out way the benefits so I just have to live with it.
  • I had lots of physical therapy when I was little. Of course at that age PT is playing games and having fun. Took ballet and tap dance too.

Individuals with spina bifida often have trouble processing information (for example, understanding and remembering instructions). Information processing is a key skill in academic areas such as mathematics, science, reading comprehension, and writing. The difficulty is not limited to schoolwork, however, but also applies to processing day to day information from parents, siblings, and school classmates. Individuals living with spina bifida and their parents have reported problems in several areas, such as completing assignments in a timely manner, finding and getting to the classroom in the time allotted, remembering to take medication, and performing required treatments (e.g., catheterizations) at the prescribed time. In addition, some experience difficulty in making meaningful contact/friendships with peers, which may result in social isolation. Parents of children with spina bifida also report difficulty promoting independence and self care. They may find it necessary to repeat seemingly straight forward directions over and over.They are accused of being lazy, rude or uncooperative. [mydoctor.kaiserpermanente.org]

  • Many people have learning disabilities. Specifically Nonverbal Learning Disorder. It is a big part of having Spina Bifida.
  • School was incredibly difficult for me. I started falling behind in math in about 3rd grade. Math still makes no sense to me even simple addition and subtraction takes me longer to do then most people.
  • Big projects were hard because they require you to break them down into smaller parts and I never figured out how to do that. I always ended up scrambling at the last second to finish.
  • Taking a test is nearly impossible. I may know the material, but trying to translate that into answering questions or writing an essay doesn’t work
  • I have a very hard time summarizing things I’ve read but I love to read.
  • I’ve been called lazy when many times I just forgot that I was asked to do something. Or couldn’t remember/didn’t know how to do something.
  • I’ve had many situations where I was asked to do a list of things and only manage to remember one maybe two of the things I was supposed to do, and have to ask what else I was supposed to do. Or I spend so much time doing the first thing that there’s no time left for the rest.

Talking to Kate and reading her answers, I found out so many things I had not known before, even through spending every day with her for years.

I started to recognize some things about myself, that I had previously dismissed, or just believed when people (mainly teachers and fellow students) said I was lazy or just not trying hard enough.  Be careful, especially teachers, how you handle a child that doesn’t ‘fit in the mold’. Teachers can be a child’s greatest empowerers or their most destructive bulldozers.

I started to get angry and frustrated, specifically about our school system, and how if you can’t cut it the way they lay it out, with reading and writing and math tests, you’re almost doomed for failure. Even though there is a wealth of other knowledge and talent that these children and people have to offer. Or just more effective ways of displaying what they have learned.

That is where we have failed as a society.

Do I know how to fix it? No, I don’t. But it needs to be fixed. One person can’t change it. 100 people can’t change it. It needs to start as a change in our hearts and mindsets.

Spina Bifida Awareness Month!

Kate :) Photo Credit: Romi

Kate 🙂
Photo Credit: Romi

October is Spina Bifida Awareness Month! As some of you may remember, one of my (two) best friends has Spina Bifida. Some of you fellow bloggers do as well, and I wanted to get your input. What do you want to see on the subject? What do you want others to know about SB? Chime in!