Did you know that John (used-to-be-Cougar) Mellencamp was born with Spina Bifida? I didn’t up until a few weeks ago. For some reason I was googling “famous people with SpinaBifida” and his name popped up. Now, looking at him he looks completely normal and seems to have had a ‘normal, active life’ so I’m assuming he was diagnosed with the very mildest form of Spina Bifida that normally needs no medical intervention. Some people can go years, or a lifetime and not know they have it. Those are the lucky ones.
I wanted to write something today for Spina Bifida Awareness month (which is October) that had some information about SB for our friends and family to read. I was talking with my mother and grandmother the other day about Eliza and all her pretty outfits my mother has made for her (already) and my grandmother said something to the effect of, ” Well, she shouldn’t wear something like that until she starts standing up.” The comment was harmless enough and honestly, I really don’t think she has a grasp on what Eliza’s diagnosis truly means. I think she believes that she has something wrong with her back and a doctor will ‘fix it’ after she’s born. And wouldn’t that be a miracle if that actually happened?? Her assumption is not her fault, she’s 86 for crying out loud. When she was having kids and encountered a child who was “crippled” there was a “bless his heart” comment, maybe some conversation about the child being “lame” for one reason or another and they just moved along with their day. A lot of what I tell her she doesn’t understand so I take her comments with a grain of salt and chalk it up to her age (and the fact that’s she is most certainly bat shit crazy in the best way) and move on like I didn’t hear anything. She already loves Eliza and that’s all that matters. She gave us a delicately crotcheted bib as a gift the other day and I can remember her making it. I was probably in college at the time and she knew she wouldn’t be able to make these delicate things ‘by the time I got married’…many many years and many infertility diagnosis later, there it was for me. She had saved it through 3 other grandchildren just for my one-day daughter. So when she says things like the above mentioned I think of that bib.
But throughout all that I realized that a lot of my friends and family had probably never heard of SB until we were diagnosed. Maybe some of you knew someone, maybe some of you googled ‘what is Spina Bifida’ to learn more for our sake but unfortunately most people don’t know what it is…I didn’t.
So this is what I now know: (and God-willing I will be able to upload pictures lol)– *Disclaimer: I have no idea how the bottom part of this is underlined. It must have been due to the photos. I tried to fix it and my screen went black and I freaked out so it’s still there and I need a genius to fix it. So sorry.
First off, Spina Bifida occurs in approximately 1 out of 1000 newborns in the United States which makes it one of the most common of the permanently disabling birth defects. More children have Spina Bifida than those who have muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.
Spina Bifida literally means “split spine.” Spina Bifida happens when a baby is in the womb and the spinal column does not close all the way.
(Side note: Eliza loves Mexican food so I will explain this in comparison to a tortilla)
At conception, your baby is just a cluster of cells which duplicate and grow until they are a flat, round cluster of cells, sort of like a tortilla. Around the 3rd or 4th week of pregnancy, that tortilla begins to curl on itself like a rolled taco (mmm…tacos). The baby’s head will develop at one end, the legs at the other and the rest of the rolled taco will become the spinal cord.
In the case of a baby with Spina Bifida, for some reason the tortilla does not get completely rolled together. There may be gaps or entire areas that fail to close. (Credit to thedawgrun.com)
There are a few types of Spina Bifida. They vary in degrees of severity.
Spina Bifida Occulta is considered ‘hidden Spina Bifida’ because most people don’t know they have it, some have a dimple or a small tuft of hair in the lowest part of their back close to their tail bone. Most of the time it’s only found when a person has to have an X-ray for something completely unrelated.
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 generally no nerve damage. Individuals diagnosed with this may have minor disabilities though.
Myelomeningocele is the most severe (and most common) form of Spina Bifida. (This is what Eliza has)
It happens when part 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 also have fluid on their brains (hydrocephalus). This happens because the fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up and causes pressure and swelling. Without treatment it can lead to brain damage. This is where a shunt comes into play. More on that nifty device later.
A child with myelomeningocele is usually operated on 24-48 hours after birth to close the opening in the child’s back. A neurosurgeon is able to push (for lack of a better word) the exposed nerves and spinal cord into the back and close it up. Unfortunately, the nerves that are exposed for long periods of time to amniotic fluid are damaged and cannot be repaired.
The extent of the damage and what nerves are actually affected come down to the lesion level.
Basically your spinal column consists of four regions: the cervical region which starts at the base of you noggin and extends to close to shoulder blade level, the thoracic region below that begins below that, down the rib cage and extends to below the belly button area. The lumbar region includes the hip area and the sacral region is the lowest part of your tail bone.
The first thing 'they' (doctors) tell you is the "lower the better" when dealing with Spina Bifida. For instance, if a child has a lesion in their sacral area, odds are they will not have to use any equipment to aid them in getting around. The odds of them walking and running are very very good. This is because the nerves that run through the sacral region are the only nerves affected by their lesion. Most nerves that govern feeling and movement in the legs are in the lumbar region. Depending on how high or low in the lesion is in the lumbar region is how one would base how dependent one is with walking aids. The thoracic region is the area that is considered "higher than one would like to see" (Once again, this is Eliza's diagnosis). She is currently diagnosed at T10 level spina bifida. So basically there is an opening in her tiny back that extends from about belly button level alllllllll the way down to her tail bone.
In my research I've only been able to find a small handful of parents whose child has been diagnosed with thoracic level spina bifida. So once again, Miss Eliza is rare…
James and I have been faced with the reality that Eliza will most likely be wheelchair bound, not wheelchair 'dependent'– because if I haven't learned anything else I've learned that wheelchairs offer SO MUCH independence!
In addition to the initial surgery to close her back, Eliza will more than likely have to have a shunt inserted to re-route excess cerebrospinal fluid from her noggin to her bladder. Basically what happens is the team waits until after the initial back surgery to check for hydrocephalus, because it can either be initially present OR present itself after back surgery and they diagnose the severity. If a shunt is the optimal solution, the surgeon will drill a hole into her skull behind her ear and insert a tube that extends from there through her body and into her bladder. There is also a small incision in the tummy as well. This will depress the fluid and be a permanent solution for hydrocephalus. In optimal cases, the shunt will work fine, but most times this procedure must be repeated due to the tube clogging.
I've met a mother who's child had 4 shunt revisions in the first year of her child's life… So hopefully this will work the first time (if we need it).
Another issue parents with children with Spina Bifida have to undertake is bladder and bowel control. Since these areas are governed in the lower sacral region most all kids with Spina Bifida have these issues. Some children have to do intermediate catheterization, which involves placing a small tube into the urethra and draining urine several times a day. This helps to completely empty out the bladder. Some SB kids need it upon birth, some start a program in later years as necessary. The nerves are damaged so the child can't 'feel' when it's time to go. And sometimes if they can feel it, the bladder won't empty out completely which can lead to UTIs and bladder hardening and all sorts of scary things. Same goes for bowels. Most times enemas and things are used for this. (I won't go into poo…no one wants to read about poo, right?)
The GOOD thing about it all is that most children with Spina Bifida don't have any cognitive issues. To put it plainly, most are pretty smart. Most score in the normal to above normal range in IQ testing. Most attend regular school and go on to attend college.
The day after we were diagnosed I reached out to a friend who is a special education teacher at one of our local high schools. I asked her if she taught any kids with Spina Bifida. I didn't tell her anything about the baby, just curious. At first her reply was "no"… Then I got a response back from her that stated she asked around the school and found a child that did have Spina Bifida, a boy– And guess what, he uses a wheelchair BUT is in normal classes and is an A student! She said in all likelihood he will graduate and be able to live independently one day. I can't tell you how happy that made me.
I think the worst part about all this is that saying "every SB kid is as different as snowflakes"… And it's true. I've read about so many different children who had the same diagnosis and one functions completely different than the other. It's the wait-and-see that gets us….
I feel so not in control of anything regarding Eliza. So naturally I am displacing all that fear and anxiety into things I CAN control…like freaking out over not having everything in her nursery in order. I was sitting in the floor of her nursery the other day changing out knobs on her changing table and just cried…cried because I hadn't finished her nursery and because one of my girlfriends who is also pregnant (but way behind me) was posting nursery pics on facebook already!
*I've cried because (before her first shower) she only had one pair of shoes. Now tell me the logic in this: I'm crying (weeping uncontrollably) because my in utero baby who may not ever be able to walk ONLY has ONE pair of shoes. What's logical about that?? I can laugh (now) about it.
*I've cried because the pantry is not organized.
*I've cried because I was told that we "didn't need baskets" for her closet. (For the record, I totally won that argument yesterday. I believe James said the baskets were,"pretty adorable" and we may in fact need them)
*I've cried because the stupid body pillow I bought to sleep more comfortably is just stupid.
*cankles. Yep, I said it. I cry over Flintstone feet.
And I gotta hand it to James. He's been pretty cool about it all. He's only gotten flustered like, once and it was because I KNEW I was being completely irrational but was crying anyway and he couldn't get me to stop. Hugs and the offer of a cupcake didn't quell the deluge of tears…
He's a saint I tell ya. He's currently working on a post called A Love Story that he won't let me read so hopefully it's about us and not the Denver Broncos. That one won't bore you as I'm sure this one has! I really just wanted to be informative. I'm no writer like James is. But I never claimed to be either. I draw pretty pictures.
Anyhoo, I hope this has helped you understand a little bit about Eliza. But once again, we won't know anything for sure until she makes her appearance.
I'm throwing in a few helpful photos of some of the things I've discussed (because I'm a visual learner).