Lucky

I’m part of a Facebook group for parents of children with spina bifida. We talk a lot about our kids’ poop (really), because that’s the focus, but a lot of things can come up. One of the things that comes up once in a while is a post from expecting parents who just found out their unborn child has spina bifida. These posts are wrenching to read, because they’re filled with such confusion and fear and grief, and they’re looking for some reassurance and hope.

All SB parents go through this (or any parents whose child has a birth defect). I’ll never forget the day, at 16 weeks during a routine ultrasound, that we found out our unborn baby had a “neural tube defect” . A rapid succession of disbelief, confusion, denial, and then outright terror shot through me. We’d barely heard of spina bifida, knew almost nothing about it. It was something that happened to “other people”, those unfortunate souls. Not us. Not our child.

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Baby days

But the proof was right there in front of us, as the doctor showed us the ultrasound pictures, pointed out the defect on the end of her spine, tried to explain what it was, and what, in a vague kind of way, might come of it. What had started out as an exciting day (we found out we were having a girl–yay!) had turned into a nightmare.

The next few months, I spent a lot of time online looking up information about spina bifida. I’m not sure that was such a great idea, since it painted a terrifying picture of what we and our child might go through. Myelomeningocele (the official term) is a fairly serious defect of the spine, and as such, can have a systemic affect, touching almost every system of the body. We were looking at the possibility of hydrocephalus, paraplegia, bladder and bowel problems, countless surgeries. My mind reeled with it, my heart shattered, my hope of any normal life for us or our child withered.

So I understand these expectant parents who cry out for reassurance. Their world is crumbling. I understand their frustration at doctors who can’t give them the information they want. I was so angry they couldn’t tell me exactly what to expect. As if they were gods or fortune-tellers, rather than human doctors who didn’t have all the answers. The thing about spina bifida is that every child born with it is different. Most have hydrocephalus and will need a shunt in their brain, but not all (Lilly doesn’t). Most of the time, the level of the lesion (the opening on the back that causes nerve damage) on the spine will determine mobility. Usually, the lower the lesion, the more mobility (but not necessarily). Most, if not all, need assistance with bladder and bowel function,  but again, every kid is different in how to deal with these problems.

I consider ourselves lucky in this regard. Lilly’s lesion was quite low. Early estimates put it at L5 (a fancy way of saying it was in the Lumbar region, on the fifth vertebrae), but considering her mobility and other factors, I think it’s even lower, closer to S1 or S2 (sacral). She walks independently, with braces from the knee down, though her balance is spotty and she’s easily knocked over. She used a walker the first three years of her life, and we thought we might have to transition to Lofstrand crutches (the kind with the arm cuffs), but she surprised us and walked on her own on her third birthday.

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Walker days

She’s a rarity in not needing a shunt, and has had only two surgeries in her nine years: the original closure surgery when she was 2 days old, and a cord detethering when she was 3 (this is when the spinal cord, in very simple terms, develops scar tissue and can’t stretch as she grows, causing problems). We live with the possibility it may happen again someday, but so far, so good.

The neurogenic bladder and bowel proves to be, on a practical level, the very worst part of SB, in our experience. We began catheterizing her bladder when she was 3. Honestly, the idea of inserting a tube inside her bladder to empty it terrified me, at first. But like anything, after some practice, it was easy and usually painless. Her doctor prescribed Ditropan to keep her from leaking between cathings, and we haven’t experienced any serious side effects, although it does exacerbate constipation, which is the bane of any SB person’s life. Another problem we’ve struggled with is urinary tract infections. Quite a few when she was a toddler, then several years with no trace, and then last year, recurring infections and a rising resistance to antibiotics. We’ve talked to the urologist, and she suggested a low-dose prophylactic antibiotic called Macrodantin, which seems to be helping. The biggest problem these days is getting started on teaching Lilly how to catheterize herself for more independence (and give Mom and Dad a break!). She just doesn’t seem interested, and if I push it, there’s tears or pouting. Good times!

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Early potty days

The other side of the bathroom coin is bowel function. Because of the nerve damage, the bowel is significantly slowed down, causing constipation. There may be limited or no sensation during bowel movements. Laxatives are a fact of life. A combination of Miralax and Ex-Lax seems to be working for Lilly, along with a cone enema every other night. This procedure, too, scared me at first, but now it’s part of our normal routine. Results can be varied, depending on whether or not she drank the milk or water I put her Miralax in, or if I forgot to give her the Ex-Lax that morning, or what she’s been eating, and on and on. I think “controlled constipation” is what we’ve learned to live with, although I probably need to work a little harder on cleaning her out. Some days she can wear real underwear, and some days she has Pull-Ups on, just in case. She’s had accidents at school, but far less than before we started the cone enema. It’s more work, but worth it.

Did I mention she has a lot of doctor appointments? She has an army of specialists, because so many different systems are affected. There’s her pediatrician, of course, but there’s also her urologist (who we see through Shriner’s Hospital), her neurosurgeon (who keeps track of her brain, watching for any signs of hyrdrocephalus and orders various MRI’s on occasion), her physiatrist (kind of like an orthopedist, but instead of performing surgery, tries more corrective ways to deal with gait problems), her orthotist, who makes her braces based the physiatrist’s prescription, an eye specialist (just to keep a look out for special problems SB kids may develop), and who knows who else I may be forgetting. Needless to say, she misses more school than the average kid. So far, it doesn’t seem to be affecting her progress too much. Sometimes SB kids have cognitive or learning problems, like trouble with organizational skills or concentration. Lilly doesn’t seem to be any worse on these counts than any other child her age. We have a 504 plan at school to make sure her physical needs are met, which we tweak every year.

Worry has become a constant state of being in my life.

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Sounds overwhelming, doesn’t it? It can be. But so is parenthood in general. How can you ever prepare for what’s asked of you? You can’t, not really. So if you’re an expectant SB parent, what can I tell you except this: your experience with your child may be similar to ours, or it may not. Maybe your child will need those orthopedic surgeries, that spinal fusion, a Mace or Mitranoff, bladder augmentation, or any number of other things. Regardless, it will be challenging. There will be really tough days, and there will be rage at the gods. Doubtless, there will be tears.

But there will also be love. More love than I ever thought humanly possible. Sure, I wish she didn’t have SB (don’t believe anyone who may tell you otherwise; that’s bullshit). But she does, and I don’t love her any less for it. I feel so lucky to have this child in my life.

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Scar

flower sb

Lilly’s scar is in the lumbar region, rising up from her tailbone at least 3 or 4 inches. It’s surrounded by a pinkish-red halo at the bottom, where the original lesion was, a bubble of spinal nerves that protruded from her body. The original repair surgery left a fairly delicate scar (though it seemed a little horrific in a Frankenstein kind of way when the stitches were still in as an infant), round and bulbous at the bottom, and then a thin line rising up like a vine, with a small feathery shape at the top. It’s not so bad, I thought. When she grows up, she can get a tattoo around it, make it look like a pretty flower. Naive of me to think that she wouldn’t ever need another surgery.

At 3, she had tethered cord surgery. The neurosurgeon had to revisit the area, slice through the original scar tissue, butcher it a bit more. The resulting scar is thicker, a little longer; you can see the cross-hatch stitching along the sides, like a zipper. No delicate flower anymore, though it faintly shines pearlescent. No flower tattoo to pretty it up, and who knows if she’ll need surgery again? Better to look at the scar itself as a tattoo. I’ve heard them referred to as “badges of courage”, though obviously she remembers neither surgery. There was no opportunity for bravery; but we like to make heroes of our children.Lilly had always been curious about the scar, wanted to hear the stories behind the surgeries. Only now has she become aware that not all children have these scars. She’s “different”.

We solved the diaper dilemma with Goodnites underwear (normally used by kids who have bed wetting problems at night, utilized here for bowel accidents during the day). They look like normal underwear, and it’s all right if the top shows over her jeans. But the scar still shows now and then, a pale caterpillar crawling up from below the waistband. I try to find long shirts to cover it, but the shirts still ride up sometimes when she sits or bends over. She’s not distraught over it yet, just aware. A day will come when she will do anything to cover it up so no one sees.

I will help her in this, but I’ll also encourage her not to be ashamed of it. It’s not a brand of shame, any more than it’s a badge of courage. It’s a scar she was left with because of two surgeries. That’s all. She can look at it as ugly or beautiful, but it’s a part of who she is, part of her landscape. It’s hard enough raising a girl who accepts her body. Scars (and disability) make it harder.