You have already spent more than a decade helping your son or daughter through the challenges of spina bifida. This neurological birth defect results from an improperly formed spinal cord and can cause nerve damage, hydrocephalus, paralysis, and a host of other physical and cognitive disabilities. Childhood may be full of regular doctor’s visits and surgeries, and as the teen years approach, you may be doubtful of your child’s ability to operate a vehicle. Despite all of the challenges caused by spina bifida, many people will still be able to get behind the wheel, though they may require special adaptive driving equipment and additional training to reach their goals of mobility and independence.
What is spina bifida?
Spina bifida is the most common neurologic birth defect worldwide affecting about 3 out of every 10,000 children. In the first few weeks of pregnancy, as the tissue that will become the baby’s brain and spinal cord is forming, an error occurs in which the neural tissue fails to form into a tube shape. This causes problems with the formation of the spinal cord and can result in nerve tissue bulging out of the spine.
The exact cause of spina bifida is unknown, but it has been likened to a deficiency of folate in the mother, as well as the mother having uncontrolled diabetes, obesity, or being on certain medications, particularly antiseizure medicines.
There are three types of spina bifida with varying degrees of severity.
Spina bifida occulta
The mildest form is called spina bifida occulta. It occurs when one or more of the vertebrae does not form correctly, but generally has few to no symptoms and may go undetected for years. When it does have symptoms, they may include pain, numbness, or weakness in the back and legs or curvature of the spine known as scoliosis.
Meningocele spina bifida
Meningocele spina bifida occurs when the bones of the spinal cord do not close properly and the lining around the cord, known as the meninges, herniates out. This often presents with a fluid-filled sack over the affected area of the spine. In this form, the nerves are generally not affected or only mildly affected, so while it may require surgery, there are rarely serious deficits.
Myelomeningocele spina bifida
Nearly three-fourths of spinal bifida cases are of the myelomeningocele variety. This is also the most serious form of the disease and can lead to paralysis, lower-limb deformities, hydrocephalus (water on the brain), cognitive impairment, incontinence, and lack of bowel control.
In some cases, spina bifida can be addressed surgically while the baby is still in the womb, and in other cases, surgery may be carried out in the first few days after birth. They may have complications from the surgery years or decades later where the spinal cord adheres to scar tissue. This can cause nerve damage that can impair leg function.
It is common for spina bifida patients to have shunts placed to drain excess cerebral spinal fluid (CSF) and relieve pressure on their brains from hydrocephalus. These shunts do not fix their deficits and may cause the complication of additional surgeries to repair or replace the shunt later in their lives. Because of this and other complications, of those children with spina bifida who can walk, 20-50% of them will end up in a wheelchair later in life.
How can spina bifida affect my child’s ability to drive?
Since spina bifida can affect different people in different ways, the problems it causes one person can be different than those of another.
How spina bifida affects a driver’s cognitive abilities
Some cases of spina bifida may cause hydrocephalus or damage to other portions of the brain. It is common for children with spina bifida to have learning disabilities or memory problems. This means that some people with this disorder will not be able to learn how to drive or remember the rules of the road. Others may be able to learn and remember rules, but with some difficulty. Some children have perception issues, which means that even though they can see fine, they struggle to process and understand the information they obtain visually. This means they may struggle to read signs or interpret the significance of lines on the road or oncoming vehicles, for example. They may also have issues with hand/eye coordination, which can make steering and avoiding collisions difficult, or with short-term memory, which can hinder their ability to recall where they are going. Others may have problems with concentration and become easily distracted while behind the wheel.
How spina bifida affects a driver’s physical abilities
Many children with spina bifida experience a loss of function in their legs, which can make operating the pedals difficult. Even if they can walk now, there is often the possibility of progressive deterioration in the affected area of the spinal cord, which can lead to a slow loss of leg function over time. Many may become dependent on a wheelchair to get around, which means they will need a way to either stow their chair in their car or have mounts to lock it in the driver’s position.
How spina bifida affects a driver’s visual abilities
Many people with spina bifida have some sort of vision problem. This is usually in direct association with hydrocephalus. When there is increased pressure inside the skull from excess CSF, it can cause damage to the optic nerve, which reduces its signal to the brain. This may cause problems with acuity, color vision, the size of the field of vision, double vision, or strabismus (a condition in which the eyes look in different directions and their movement is not coordinated). Any of these problems can make seeing other vehicles or hazards difficult for drivers.
What can I do at home to prepare my child for driving with spina bifida?
Likely, your child has already had some interaction with a physical therapist. They can teach them certain exercises that will help them improve muscle strength and range of motion.
As some people with spina bifida may have learning disabilities, start teaching them the rules of the road and the basic principles of driving well before you think they will start official lessons. This can help speed up how quickly they catch on in driver’s ed.
As with any disease or injury, the best things you can do are make sure you child is eating a healthy diet, getting adequate sleep and plenty of appropriate exercise.
Who determines if my child can drive with spina bifida?
One of the first steps is for you to have a conversation with your child about their driving goals. Some people with spina bifida may not have the desire to drive, whereas others may be itching to get going as soon as possible. Keep in mind that just because they have physical or cognitive limitations does not mean that they will be unable to safely operate a vehicle. This is a decision that is best made with the help of a Certified Driver Rehab Specialist (CDRS), who can objectively measure their abilities and make recommendations to your child’s physician and to the DMV about their ability to drive.
From a legal standpoint, there are no laws in Connecticut that prohibit someone with spina bifida from driving, but they will still need to pass state driving tests, including any special tests needed for any necessary adaptive driving equipment. This adaptive equipment can be tailored to suit their unique situation, but it can also be very expensive. Speaking with a CDRS will help you determine the best course of action.
What does Next Street look for when assessing spina bifida patients?
Whenever possible, we try to meet with our patients in the comfort of their own homes to carry out an assessment of your abilities. All your child needs to do to prepare is to get a good night’s sleep and eat normal meals so they have the strength and energy to get through the visit, which can take up to two hours. They don’t need to worry about memorizing anything, this isn’t a test of their knowledge, it is an assessment of their motor skills and cognitive and visual abilities.
We start out by taking the time to get to know your child and their unique situation. Then we evaluate their visual, physical, and cognitive abilities. We check their visual acuity, peripheral vision, and ability to move their eyes about and scan their environment. We check physical flexibility, strength, and coordination. This includes both muscle coordination and hand-eye coordination. There will also be several exercises we do to evaluate memory, awareness, judgment, and the ability to follow directions. Depending on how this goes, we may refer them to another specialist to address specific needs or for a behind-the-wheel evaluation at a later date.
Possible driving outcomes
Some cases of spina bifida, particularly of spina bifida occulta, can be mild enough that they do not create any serious deficits, and the person is free to drive.
Adaptive driving devices
For many with spina bifida, driving is not possible without the help of adaptive driving devices. In particular, the problems they face with their lower limbs mean that they often need some sort of hand controls to operate the gas and brakes.
Restricted driving privilege
In some cases, someone’s disabilities are mild enough that they can drive, but still cause problems that make driving in certain conditions dangerous. Sometimes vision problems mean that night driving is not safe, or if the person has delayed reactions due to physical or cognitive limitations, they may be restricted from driving in busy situations like on the freeway or in heavy traffic.
Prohibited from driving
For some people with spina bifida, their cognitive challenges are significant enough that even with adaptive equipment, they cannot safely operate a vehicle. When this is the case, we will work with them to create a transportation plan that accommodates their needs. This may involve loved ones with vehicles modified for wheelchair use, as well as certain specialty and public transport service.