Spina Bifida: Aloshua’s Story
My 10 year old son, Aloshua was born with spina bifida.
I realize that a lot of you already know that, but I am often asked questions regarding how it affects us and his abilities. Since October is Spina Bifida Awareness Month and I realized that I never even shared his spina bifida story on my blog I thought I would do that and answer some of the most frequently asked questions about spina bifida.
What is spina bifida?
Spina bifida is a neural tube defect present at birth. While a baby is forming in the womb, the neural tube closes very early. In children with spina bifida, the tube doesn’t properly close causing the defect. These illustrations show it better than I could explain it. It ranges from moderate to severe. Aloshua was diagnosed with the most severe type (myelomeningocele), however he did not have anything protruding from his back. He did have a hole going straight into his back, open all the way to his spinal cord.
Is spina Bifida a death sentence?
No! Spina bifida is not a death sentence. Sure, there are some complications associated with spina bifida that could result in death, but if we are getting technical here, any person who has a body (read: everyone) could have some “complications” resulting in death. Most people with spina bifida live well into adulthood.
How is spina bifida diagnosed?
Spina bifida is usually diagnosed during pregnancy via ultrasound scans. It can also be detected with blood tests or at birth upon physical examination.
How was Aloshua diagnosed with spina bifida?
Funny enough, Aloshua was NOT diagnosed during my pregnancy or immediately after birth. In fact, all of my ultrasound scans appeared normal, except that he was measuring large for his gestational age. Looking back, this should have been a clue, but as far as any defects, there were none visible on ultrasound. We just assumed that I birthed large babies since Kaia, my first born son, was also on the large side for his gestational age.
Aloshua was born* at 27 weeks gestation and was not breathing on his own. I remember the doctors saying “hydrocephalus” before they could even get him to the table to start CPR. I knew what hydrocephalus was and immediately thought back to the ultrasound where his head was measuring larger than what it should have been. (Since his stomach was also measuring larger, they weren’t too concerned at the time**). He was born facing sideways/slightly up. During CPR he was placed on his back and immediately put on a high frequency oscillating ventilator (HFOV). This is basically a CPAP machine that vibrates. It is supposed to be easier on the under develop lungs of micro preemies. I’m not sure exactly why, but patients on this machine – compared to a regular ventilator – must remain on their backs.
Aloshua was a day old when he was diagnosed with spina bifida. It just so happens that a nurse was lifting him up to change his diaper and noticed a hole in his back. She called the doctor who then examined him, ran a few tests, including MRI, and then came into my hospital room and informed me that he had spina bifida, hydrocephalus, and a Chiari II malformation.
I was then told that he would need surgery once he was stable and could be transferred to the nearest Children’s Hospital to repair the defect. Because I lived so far away from the hospital where I gave birth, they allowed me to stay another day so I could be close to him. Before I was even released from the hospital, they had transferred him to Arkansas Children’s Hospital. Within a few days of his birth, he had surgery to repair the defect.
*I will share his birth story one day
**His stomach was measuring larger due to another abnormality called Malrotation.
Is there a cure for spina bifida?
No. There is no cure for spina bifida but there are treatment options. Surgery is one of those. Babies born with spina bifida normally have surgery within hours or days of birth to repair the defect. This does not heal any damage that has already been done to the spinal cord and nerves surrounding it.
Does spina bifida cause paralysis?
Yes, but not always. Spina bifida is usually referred to as being a certain level, meaning which part of the spine the lesion occurred. Typically, the higher level, the more paralysis. This is because the functions of the body are controlled by different levels of the spinal cord. (Check out that link for an explanation of the functions at each level) Usually a person with spina bifida will see decreased movement, function, or sensation from the level it occurred and below. Aloshua’s occurred somewhat high at T12/L1. Depending on how severe the defect is, there could be complete paralysis, or none at all. Each person is different.
Can Aloshua move his legs?
Yes! This question always made me giggle when the doctors would ask if he had any mobility in his legs. Despite his diagnosis, he has very good mobility and was able to kick quite hard from an early age. Even though he can move his legs fairly well, he has no control over the muscles along the backs of his legs. This limits movement and makes his legs weak.
Can Aloshua walk?
With the help of braces and a walker, he can walk. He tires out very easily and cannot walk long distances. He uses a wheelchair when out and about. At home, he prefers to crawl. His physical therapists are currently working with him using arm/elbow crutches. He is still quite unsteady with these, but making progress. It is our hope that he will become strong enough to use the crutches about 50% of the time and the wheelchair for longer distances.
Does Aloshua wear diapers and will he always wear them?
Aloshua wears diapers and will likely always wear them. He does not have full control of his bladder or bowel. He also uses a urinary catheter to help empty his bladder. He currently has no interest in trying to use the toilet or learning how to cath himself. It makes it hard to decipher if he can even tell when he has the urge to go.
What is hydrocephalus and Chiari malformation and how are they treated?
Hydrocephalus is basically a build up of fluid in the ventricles surrounding the brain. Most people with spina bifida also have hydrocephalus. Some are able to manage it on their own, but others require a shunt that drains the excess fluid into a specified place in the body. Aloshua has a VP shunt. This shunt drains the fluid from his ventricles into his peritoneal cavity in the abdomen. As with all medical devices, it can, and has failed. Surgery has to be done to repair or replace the shunt. He has had his repaired due to malfunction, and replaced due to infection.
Chiari malformation is a hind brain herniation. Parts of the cerebellum extend past the skull. This can cause an increase pressure, and also inhibit cerebral spinal fluid flow. Some people have surgery to help decrease the pressure caused by the herniation. Sometimes, a shunt is enough to decrease the pressure to a manageable amount, but the only treatment for Chiari is surgery. Aloshua has not had a Chiari decompression surgery.
What causes spina bifida?
Spina bifida is a genetic disorder but can also manifest in families with no prior history. It is believed that a lack of folic acid can cause spina bifida. Funny enough, at the time of my pregnancy I was still breastfeeding my older child and taking prenatal vitamins.
Did you do anything different with your last pregnancy?
Yes. Because of the belief that a lack of folic acid can possibly cause spina bifida, I made sure to increase my folic acid intake as well as continue my prenatal vitamins. To this day, I still take prenatal vitamins with folic acid. I also had numerous anatomy scans checking for spina bifida and other defects. Since Aloshua’s wasn’t detected on ultrasound, I wouldn’t let myself relax too much until my daughter was born and I could see with my own eyes that she didn’t have it. – Funny story.. My oldest son was diagnosed with cleft lip and palate in utero, but he came out perfectly fine. It just goes to show that ultrasounds can be wrong either way.
How is Aloshua affected emotionally?
I have always made it a point to raise Aloshua with the mindset that he is not “disabled”. At the same time, a hospital life with endless appointments and therapy visits is something he has always known. He is a very happy child despite that and doesn’t let his condition get him down. He realizes that he is different than most kids, but he also knows that there are plenty of other people in wheelchairs and that people come in all kinds of abilities.
Because of his diagnoses there is an increased risk of depression, but as of right now, he does not show any signs of depression.
What do we wish adults knew about him/spina bifida?
He is a normal kid. Spina bifida doesn’t define him and his wheelchair doesn’t define his abilities. If the chair fits, then there is a way to accomplish anything. If the chair doesn’t fit, then we find other ways to do things. He isn’t helpless. He is very independent. He doesn’t need somebody to hold all the doors open for him, or help him at the slightest hint of a struggle.
Funny enough.. Aloshua is very independent and likes to do things himself. He often gets very angry at me when he is struggling and I try to help him. If a stranger helps him, then he smiles and accepts the help, but he often tells me afterward that he didn’t need the help.
He doesn’t lack attention and doesn’t need to be showered with extra praise or gifts. While it is sweet that many people want to give him things, it is only teaching him to expect these gifts his whole life, and it’s pretty crappy especially when his siblings are standing by and get nothing.
Aloshua does not need pity either, and I feel like sometimes people give him things or do things for him out of pity. Trust me, he does not feel sorry that he is in a chair and you shouldn’t feel sorry for him either.
And lastly, it would be pretty weird if somebody came up to you and said “Wow, you walk really good”. It is equally as awkward when somebody tells him that he “gets around really good in his wheelchair”. His wheelchair is how he is mobile. Of course he gets around good in it.
If you find yourself at a loss for words when you come across him, or anybody in a wheelchair, just treat them normally! Don’t do anything differently than you would with other people. Chances are, if they need help opening the door, or something else, they will ask. By you immediately jumping in, it is giving off a vibe that you feel they are incapable, and it isn’t taken to lightly (see the part above where Aloshua gets angry when I intervene too quickly).
Finally, how is Aloshua doing now?
Great! Despite all the problems he has faced, and the diagnoses he still has, he is making continued improvements in all areas of his life every day. He recently had a Pulmonary appointment and the doctor remarked that this was the healthiest he has ever been and the best he has ever breathed.
I hope that covered all the questions we frequently get. If you have any additional questions, let us know in the comments.