A conversation in my life as a mother with a child who has spina bifida:
Them: “Hey! How’s Easton doing?”
Me: “He’s doing great! Thanks for asking!”
Them: “What’s he doing these days?”
Me: “Well, he’s sitting awesome and is army crawling all over the house!! He’s into everything and he’s totally eating me out of house and home!”
Them: “Awesome! How old is he now?”
Me: “He’s 11 months – I can’t believe it!! Time is flying.”
Them: “So why does he wear those braces on his feet?”
Me: (always stumbling as to how best to answer that….) “Well, they help position his feet because he can’t move them on his own. Wearing the braces give his ankles the stability they need to stand.”
Them: “But since you had surgery and had the spina bifida fixed he’s going to walk right?”
Me: “Well, we hope so but we aren’t sure yet – even though we had surgery, they can’t really fix spina bifida. For now we are just thrilled with what he’s doing and hopeful for what he will be able to do in the future. “
I love talking about Easton! I love when people ask me how he is doing!! What mom wouldn’t want to brag about their ADORABLE 11 month old??!! But….shame on the medical community for using terminology like “surgical correction” when discussing a diagnosis for spina bifida because it doesn’t really explain what is actually going on. So, now, as a mommy of a kiddo that has spina bifida I feel it is my responsibility to educate you all (I apologize now….this is probably going to be long) 😊
Spina bifida by definition cannot be surgically corrected. Easton will always have spina bifida. The surgery that I had (fyi - it would have been the same surgery if I had waited and had it done after he was born) was a surgical CLOSURE of the spina bifida defect.
So, let’s go back to the beginning…..(think the noise from Wayne’s World)
When a baby is developing, their spine develops like a closing zipper from your head down. Spina bifida happens when the zipper gets stuck. So, Easton’s back literally had an opened spot in it where his zipper got stuck that had exposed spinal tissue. (I’ve got pictures if anyone is interested 😳) Ok –so what is spinal tissue you ask?? Here’s a little anatomy lesson 😊 (maybe I should have been a teacher) First there is your brain which is the home base for all the nerves in your body. Your spinal tissue is all the nerves that come off the brain moving closer and closer toward the muscles. In other words – spinal tissue is pretty important stuff. It is what tells your muscles how and when move.
So, back to spina bifida. When there is an opening in the spine (where the zipper caught) all of that tissueis exposed to the “elements” which in the case of pregnancy is the amniotic fluid. (That’s the stuff you float around in while you grow 😊) So this amniotic fluid can damage these exposed nerves – this here is one of the benefits of prenatal surgery! By having the surgery when I was only 21 weeks pregnant, Easton’s nerves were exposed for a shorter period of time than if I had carried him full term and then he had had the surgery! The other part of this puzzle is that all of these nerves are connected to your brain, which is way up in your skull. There is an opening in the bottom of your skull (called your foramen magnum) that is big enough for all of your spinal nerves but is isn’t big enough for your brain. When there is an open spot in your back and your nerves are bulging out it starts to pull on the nerves more and more (and can even pull on the brain which is called Arnold Chiari – but that’s for another lesson). This pulling can also damage the nerves – again another benefit of having surgery! By having Easton CLOSED at 21 weeks – he had only grown to about the size of a carrot. So his nerves had only been stretched a little. Just think how much they would have been stretched if I had waited until he was born!! Any damage that happens to the nerves – no matter how the damage happened can affect how the nerves work and communicate with the muscles.
So, when a baby with spina bifida is surgically CLOSED it is really just a fancy way of saying that theneurosurgeon puts all the nerves back where they are supposed to be and closes up the skin. They don’t really do anything with the nerves they just put them back where they are no longer exposed to life and germs. Unfortunately they cannot take the spina bifida away – it’s always there, just covered up with skin after surgery. That catch in your zipper can happen anywhere along your spine. Where the catch happens will determine what nerves are affected. Typically the higher up (closer to the head) the catch the more significantly the person is limited in their skill level. This also helps to explain why every person with spina bifida is a little different.
Now, back to Easton. The short explanation – which if you have been reading my blog for long you know that I am not good at short explanations 😁 (Look above at my “explanation of spina bifida” if you need proof 😜) OK, back to the short explanation….Will Easton walk – since I had surgery to CLOSE his spina bifida? Well, unfortunately, I don’t have a definite answer for that one yet. We hope so. We’re praying so. But we’re also ready, willing and able to deal with it if not.
Longer answer….Easton is a pretty cool kid! We’ve know that from the beginning! He’s also not a fan of following the norm! The way your spinal nerves work is they come down in order. First the front of your legs then over your feet and up the back of your legs:
hip flexion – think marching
knee extension – think kicking
dorsiflexion – think pulling your toes back toward your nose
plantarflexion – think pushing the gas pedal
knee flexion – think kicking your self in the butt
hip extension – think swinging your leg backward when you are standing up
then come the nerves that control bowel and bladder.
Typically if a kiddo had the catch in his zipper around the place that knee extension is then all the nerves below that will also be affected. So he probably also won’t have dorsiflexion, plantarflexion, knee flexion etc. See how that works?? Well, remember how I said that Easton doesn’t really like following the norm? Well here we go….Easton has
Hip flexion – yep , think marching
Knee extension – yep, think kicking
Dorsiflexion – nope (that’s pulling toes back toward your nose)
Plantarflexion – nope (that’s pushing the gas pedal)
Knee flexion – yep but it’s weak, think kicking yourself in the butt
Hip extension – yep but it’s weak, think swinging your leg backward when you are standing up
Bowel/Bladder – to early to tell – but a prayer request for sure!!
So as you can see, he doesn’t really make a lot of sense! Easton cannot move his feet at all. That’s why he wears braces. They help position his feet so that when he is ready to stand he can. The reason that this is so cool – and another reason that I am so sure that God is in this is…..A kid without control of his feet – coming from a physical therapy persepective….NO BIG DEAL! I can slap some braces on his feet and give him the ankle control he needs to be upright - DONE. A kid without hip extension is much more complicated – even if they have good foot control they would have to wear braces that go all the way up their legs and strap around their pelvis (think forest gump). So – in other words….give me no feet and weak hips any day over the opposite!! But also say a big thank you to the Man upstairs because that set up just doesn’t make a whole lot of anatomical sense!!
So we continue with my long explanation of is Easton going to walk…..At this point the big question is how weak are his knee flexors and hip extensors. Even though those don’t seem real important when you are taking steps they are pretty essential. You have to have those hip extensors to help stabilize your pelvis when you are upright. You also have to have them to help slow down your leg after you have used the opposite (the hip flexors) to kick it forward with each step. Trust me on this one….Gait (that’s a fancy word that us physical therapists use for walking) is COMPLEX!! I’ve been doing it all the time for a lot of years and it still gets me sometimes!! So, take my word for it when I say, having knee flexion and hip extension are important for walking.
So where are we now….He is sitting beautifully. He is able to get into and out of sitting like a champ. He is army crawling all over the house, using mostly his arms. He is able to get up into all fours and rock back and forth but hasn’t figured out how to move in this position yet. We just came in for a little physical therapy magic from one of my co-workers last Friday (her name is Lisa and I SWEAR she has magic in her fingers!! I have also informed her that she will not be allowed to retire until Easton ages out of the program!!) By the end of the session she had him pulling himself up onto his knees at a bench (which he was not able to do when we walked in the door – even though mommy had been working on it at home for WEEKS!!) which is the first step to pulling up to stand. He loves to play in standing – see last blog post for video of him 😊 - but can’t figure out yet how to move his feet underneath him (meaning take any steps). So currently we are working on those hip muscles! We are playing in all fours A TON!! We are pulling up on the bench at home A TON and we are playing in standing A TON!! All of this in hopes that we can strengthen those hip muscles up enough that he is able to control his pelvis when he is standing up and taking steps on his own….but this is going to be a process…..
We’ve got a long way to go before our guy is up on his feet with his brothers but that still is very much our prayer. (and we hope that you will join us in our prayer!)
Thank you for always asking how our E-man is doing!! And please keep asking!! I, like any proud mother, will be glad to talk about the latest and greatest in his life. If I start on about a tangent about the definition of spina bifida just bear with me 😜
We are so proud of him already and look forward to all that God has in store for this boy!! God’s got big plans for him – whether that is standing on his own feet or sitting in a wheelchair!! He can eat me out of house and home from either location as well…just for the record!!
We are looking forward to lots of fun and some TOTALLY ADORABLE pictures this weekend for Easter so check back so for more of my crazy cute kids!!
Love and Hugs!