As expectant parents, it’s a normal part of the process to start preparing for your new arrival. You get his room ready with furniture, some cute little stuffed animals, and a few baby toys. You decide the theme of the room and decorate it excited for the day you get to bring your bundle of joy home to show him his room. You buy the necessary things like diapers, wipes, butt paste, and things for bath time. Even better if it’s all gifted to you!
But how do you prepare yourself for having a spina bifida child? What “things” are necessary to do beforehand? Do you start prepping your house for wheelchairs and medical equipment? Actually, I wouldn’t go that far. The best thing you can do is mentally prepare yourself for an unknown future. And learn as much as you can about spina bifida and the conditions caused by spina bifida.
That may not be the answer you were looking for, but if you can prepare your mind, you will be able to better handle what will happen next. It’s good to know what conditions are commonly associated with spina bifida which vary in severity with each child. Your child may or may not struggle with all of these conditions but it’s best to be cognizant of the possibilities.
Let me just put this out there. No matter what the prognosis might be for your little one, he or she will amaze you with their accomplishments. So if you’ve been given news from the doctors on what they think your child will be like physically and mentally, take it with a grain of salt. This child is a gift from God and only He knows what amazing things lie ahead for little junior!
Before we get into those other conditions, let’s first talk about the different types of spina bifida and briefly touch on surgeries.
3 Types of Spina Bifida
It is likely that you are already aware of the different types of spina bifida if you are a soon-to-be parent of one of these awesome kiddos. But for the sake of being thorough, we will briefly touch on each of these.
- Spina Bifida Occulta – This is the mildest form of spina bifida as there is no opening on the back. Most of the time it goes undetected until the symptoms of a tethered cord presents itself.
- Meningocele – Part of the spinal cord is pushed out into a fluid-filled sac. For most individuals with this type of spina bifida, there is usually no nerve damage.
- Myelomeningocele – This is the most severe form of spina bifida and the most common. This is where the nerves and spinal cord protrude through the open spine. Oftentimes, the nerves are exposed with no skin covering and surgery is performed within the first day or two of life to prevent infection and further nerve damage.
For the purposes of this post and this blog for that matter, we are mostly referring to the kiddos with myelomeningocele.
Surgeries Associated with Spina Bifida
Although it is impossible to tell you how many surgeries your child will need or when to expect the next one, that very first surgery could be before your little one is even born. The option to have prenatal surgery is before 26 weeks gestation. I have a separate post that goes more in depth about prenatal surgery and the decision we made about that surgery. You can read that post here.
Other types of surgeries that could be in your child’s future would be:
- Surgery to detether the spinal cord
- Treatment of hydrocephalus and recurrent shunt surgeries
- Bladder and bowel problems
- Orthopedic problems – Foot/ankle deformities, hip issues, fractures, contracted muscles
I wouldn’t let this list scare you because you still have not met your little one. Spina bifida and its complications are not predictable. That’s why it is often referred to as a snowflake condition. No two children will have the same issues, surgeries, or outcomes. With that being said, let’s now look at those other conditions caused by spina bifida.
4 Conditions Caused by Spina Bifida
Hydrocephalus and Chiari II Malformation
Hydrocephalus is the most common condition caused by spina bifida. This is also associated with Chiari malformation which is caused by the spine being pulled down into the brainstem. The flow of the cerebral spinal fluid gets “clogged” so to speak and starts to pool up in the ventricles of the brain. There are two ways the extra spinal fluid can be dealt with; a shunt or a procedure called endoscopic third ventriculostomy (ETV). If ETV is successful, this avoids the need for a shunt. Shunts come with their own set of worries that will continue for a lifetime so if ETV is a possibility for your little one, you should give it some serious thought.
Neurologic Function and Progress
Since spina bifida directly affects the nerves, it is likely your child will see a neurologist. It is common for kids with hydrocephalus to be susceptible to having seizures. Your neurologist will want to follow up to make sure there have not been any changes with seizures. The doctor will also evaluate how well your child is progressing with his milestones and may suggest more therapy if there seems to be significant developmental delays.
The neurologist will likely refer your child for a vision exam before the age of one to make sure there is no pressure behind the eyes and to determine if glasses are needed. This is a common result of hydrocephalus.
Bladder and Bowel Control
Bladder and bowel control is another common issue caused by spina bifida. Depending on where the defect is located on the spine, this will determine what possible nerve damage there will be and what other organs and limbs are affected. Things can go bad pretty quickly if the kidneys or bladder get infected so it’s essential to be aware of any changes in the urine. That’s why it’s important to follow-up with the urologist every six months for an ultrasound of the bladder and kidneys to make sure they are functioning properly.
Muscle Weakness Above and Below the Defect
Muscle weakness occurs in the trunk and limbs above and below the defect on the spine. Most likely your child will need the use of some assistive devices for his or her legs and feet. Orthotic braces for the legs and feet are pretty common with spina bifida kids. At one growing phase or another, your child may need an assistive device like a stander, wheelchair, reverse walker, or walking sticks.
Therapy, Therapy, and More Therapy
Although therapy is not a condition, it’s the result of a condition. Lots and LOTS of therapy will be in your child’s future! There are specialists that can help with developmental delays whether that’s due to physical or mental delays.
Speech, occupational, and physical therapy will help your child reach his or her milestones at just the right time for them. Check with your state to see what services are offered for early intervention services designed to help developmentally delayed children from ages zero to three years.
It’s frustrating and heart-breaking to watch them struggle with just the simplest task such as sitting up on their own, but once it’s accomplished, you’ll never feel more proud of your little one! And it goes without saying that the most influential person in helping your child reach those milestones is YOU!
Never underestimate the power of your love, support, encouragement, and enthusiasm when your child is working so hard to do “normal” things and reach those milestones. Their little faces will beam with pride knowing you are cheering them on!
Where to Go From Here
I would highly recommend finding a local spina bifida group to connect with. You can search for groups on Facebook or you can visit the Spina Bifida Association’s website to find a local chapter or online community. These groups and communities are a valuable resource for your family as you navigate through this new world.
Hopefully, you feel more prepared and less in the dark about this other side of what will be the new normal for your family. It’s definitely not the easy path but you will learn and grow so much along the way. Your child will inspire you in ways you’ve never imagined. Your new normal will make you see things in a different light and might I dare say, your world more precious and beautiful!
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