When it comes up in conversation that my daughter has Spina Bifida, people usually find polite ways to say they are not too familiar with what that is. I am never surprised by this, as I would be in the same place had it not become so personal to me.
The hard part is, coming up with a quick and simple answer to the question -
What is spina bifida?
As is the case with many medical conditions, particularly those that occur before birth, an easily explained definition is hard to come by. Even for we parents, it is an on-going education as our child grows.
That said, here is my best attempt at a mother's quick answer to this question: She was born with spina bifida. It happens early in the pregnancy when the spinal cord doesn't form properly, which leads to nerve damage that can affect many areas, specifically her ability to walk and run.
Ok, that was easy enough. That answer satisfies most inquisitive minds. However, for the close friends who want to sit down and chat over an after-dinner coffee, the answer is much more complex and detailed. Since I won't have the opportunity to sit with most of you, go ahead and pour yourself a cup of coffee and read on.
Here is an education on spina bifida from my non-scholastic perspective.
The term spina bifida literally means "split spine" in Latin where the spinal column or neural tube does not close all the way while the baby is growing inside mommy. This occurs just about 28 days after conception, usually before mom even knows she's expecting. The cause is unknown and there are many different types and levels of severity when it comes to spina bifida, but the facts are that
it is the most common permanently disabling birth defect.
Spina bifida is estimated to occur in 1 out of every 1,000 births worldwide, with a slightly lower incidence rate in the U.S. The Spina Bifida Association claims that every day about eight babies born in the U.S. have spina bifida or a similar birth defect of the brain and spine.
The image below comes from the
Mayo Clinic website, and shows the progression of a life beginning to form and how spina bifida occurs.
Those nerves in the spinal cord that never formed properly to begin with, cannot magically grow back into place and start working. Children can learn to function well and adapt to lack of sensation in their limbs and limited bowel/bladder function, but whatever the initial damage is remains. Modern medicine has progressed significantly over the past few decades to help prevent further damage to the spinal cord. Just 100 years ago, the life expectancy and quality of life for someone with spina bifida was significantly worse.
The types of spina bifida have such a broad range that those with the more mild forms may not even know they have it, while others with the most severe are completely wheelchair bound and paralyzed.
I will refer to an information sheet from the Spina Bifida Association of America, to explain the different types:
Occult Spinal Dysraphism (OSD)
Infants with this have a dimple in their lower back. Because
most babies with dimples do not have OSD, a doctor has
to check using special tools and tests to be sure. Other
signs are red marks, hyperpigmented patches on the back,
tufts of hair or small lumps. In OSD, the spinal cord may
not grow the right way and can cause serious problems
as a child grows up.
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. People find out they have it after
having an X-ray of their back, normally done for other reasons.
However, in a small group of people with SBO, pain and
neurological symptoms may occur.
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
This 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.
Unfortunately, the most severe type is also the most common type of spina bifida and that is what our little girl has - myelomeningocele.
As the image above demonstrates, with this type of spina bifida, the baby's spinal cord literally protrudes from her back in sac, or a bubble as we try to explain it to our 4 year old.
This sac can protrude anywhere from the lower spine, which is most typical, to one of the vertebrae at the top of the spine. The higher the lesion is on the spine, the worse the permanent damage. Amazingly, a child's function can vary significantly even if it's just one vertebrae higher on the spine. At the children's hospital, the doctor recently referred to Adria as "one of our L-4/L-5 kiddos." That is where her spina bifida occurred in the lumbar region of the spine and those that know about it, have a good sense of her abilities with just that statement.
The below diagram of the
spine from
spinabifidaassociation.org, details the different regions and expected functional abilities based on where the spina bifida occurred.
Now, all that may seem like a very lengthy, detailed description of this life-altering condition. Really this is just the beginning.
Because the spinal cord is the core of our central nervous system, damage from spina bifida can be far-reaching. This includes problems with walking and getting around, ability to go to the bathroom, hydrocephalus, gastrointestinal disorders, obesity, latex allergy, tendonitis, depression, sexual issues, and possible learning disabilities.
As the doctors say, every child is unique and no two individuals display all the same symptoms and challenges.
It is a daily education for us to learn our daughter's needs and how to best equip her for a full and fulfilling life. Through it all, there is one thing that remains the same, one thing that every parent can do to give their children the best life, disability or not. SHOW them LOVE.
