What Spina Bifida Looks Like (So Far): An Update

A few weeks ago, the kids and I went to weekly Rosary at our church. (In the interest of full disclosure, lest you think we are super holy or something, we showed up late and I knew about half the words to the Hail Holy Queen prayer. What I did remember sounded something like, “Hail, Holy Queen — sit down! — our life, our sweetness, and our hope. To thee — sit on your bottom! Now! — do we cry — stop crying! — poor, banished children of Eve — just take this candy. EAT THIS CANDY AND BE STILL!

 and et cetera.)

 I was chatting it up with another woman afterward, and I casually mentioned something about Henry having special needs. (I don’t know how these things come up in conversation. Honestly, whenever I’m first meeting someone, I just want to blurt out Henry has spina bifida! — not because I think it’s relevant, or that it defines him, necessarily. But because people are always shocked when we’ve been talking for a while and it inevitably comes up. I feel like I’m hoodwinking people. This woman was no exception.)

This woman was stunned. “Special needs?” She said, visibly taken aback. “What’s wrong with him?”

“Not a thing,” I said. “But he has Spina Bifida, so he has some mobility problems.”

“He does?”

“Yeah, along with some other things. He has a shunt.”

“What? You can’t even tell!”

“I know, right?!”

These conversations never fail to make me laugh. I will never forget Henry’s many ultrasounds, and hearing the words shunt and clubbed feet and multiple delays, and imagining myself giving birth to, well, some kind of creature. In utero, he seemed more like the sum of his various disabilities rather than an actual person. When I was pregnant, I desperately wanted a glimpse of what he would look like at birth, at six months, at one year. Would he be okay, in spite of his problems? Would be be deformed and eternally pitied?

And the ultimate question — Will I be able to love him? Will other people?

Fourteen months later, you’d have to be insane not to love him. He’s a butterball. He’s incredibly social — the opposite of June, who doesn’t want anything to do with you if you don’t have candy — and constantly babbling, smiling, laughing. Amazingly, he has no cognitive delays so far. He is scoring ahead of his age, developmentally, in a few areas. What I would have given to know that when I was pregnant with him. The most common question people ask me is, how’s Henry doing? I never know what to say, other than he’s incredible, he’s doing great. He’s got some medical issues, obviously, but they’re just such a small part of who he is, and they affect our day-to-day life so little, his good-natured, super strong personality just kind of eclipses all of that. He’s just great.

But anyway. Because I so desperately wanted a “future preview” of sorts, when I was pregnant, I’m hoping to provide one now, for anyone else who is wondering how Henry’s doing, and for anyone who is currently pregnant with an SB kid and wants to know what SB might specifically look like a little farther down the road. So given that Spina Bifida is a spectrum, and that all children look and develop differently, here is what Spina Bifida looks for us, 14 months out of the gate (and by “gate” I mean “vagina”).

You’re welcome, for that visual. Also jk I had a c-section.

So how can you tell he has Spina bifida?

He was eight weeks old here btw

Probably the most glaring defect Henry has is clubbed foot. By far, this was the thing that scared me the most when I was pregnant with him, other than the prospect of him being severely mentally handicapped (which, actually, is a rarity with spina bifida). The term “clubbed foot” sounds like such a horrible, grotesque anomaly. I had no idea they would be perfectly adorable baby feet that were turned inward. So not the nightmare that I was expecting.

Truth be told, we love these little hook-feet. He crawls all over the floor, and his little hook-feet catch various things and drag them across the floor with him. We’re always having to chase him down and pluck things out from between his legs. They are ridiculously soft and smooth and precious.

People ask us often when we’re going to “fix” his feet. The answer is June. We have a “tendon release” in his feet (::shudder::) and ponsetti casting scheduled for the first week of June — we wanted to wait until he was able to use those muscles developmentally, with standing and pulling up and such, so that he would potentially have a better outcome. Is it crazy that I’m going to miss these tiny feet? Is it crazy that I look at other babies’ feet and think, “Wow, those are so big and weird-looking! EW!

WRONG. Give me little hooked parenthesis feet or give me NOTHING AT ALL

One thing that’s been problematic about Henry’s SB is the lessened feeling below his knee. Since Henry has spinal cord damage, the feeling below his knee is limited. It’s kind of hard to tell what he can feel, if anything: Sometimes I swear he can feel me tickling his feet. Other times, like in January, it doesn’t look like there’s much going on down there.

In January, I went upstairs to retrieve him from his nap, and what I found in his crib shocked me. Happy as a clam, Henry was lying there with blood all over his face. When I whipped back the covers, to my eternal horror I saw that he had blood smeared all over his legs, and his toes were a mangled mess.

Like this, only not as metal

Turns out, after the husband and I stopped freaking out and calmed down enough to assess the situation, Henry was nibbling on his toes like any other baby would. Except that since he couldn’t feel any pain or pressure, he just kept nibbling…and nibbling. So in our house, when Henry’s cutting teeth, we stock up on socks, shoes, and a bunch of bandaids and antibiotics. Gross.

THOSE CHEEKS

Henry also has low trunk strength and limited hip flexion. You can see it a little bit in the picture above, how he’s kind of leaning forward and folding in on himself (granted, he was like two months old in this picture, so he wouldn’t really be sitting upright anyway). The lower trunk strength issues make him a little wobbly when he sits unassisted. The hip flexion problems make it difficult for him to stand upright.

Here’s a super-scientific diagram of what I’m talking about:

So basically, if Henry were to stand, he’d be sort of folded in on himself and standing at an angle, like a little old man using a walker. This is because of tight tendons in his hips, or something. We’re trying to stretch out these tendons in physical therapy, but there’s a small chance he might need surgery to “loosen” them. (::shudder::) Our hope is that he will be able to stand and walk, relatively unassisted. He does neither right now.

Poor hip flexion, clubbed feet, and limited trunk strength. But he's SOOO CUUUUTE

Poor hip flexion, clubbed feet, and limited trunk strength. But he’s SOOO CUUUUTE

What he can do is amazing. No, he does not walk. Yet. No, he does not stand. (Although there are kids with SB I know who can stand at this point. Like I said, it’s a spectrum.) BUT — he’s starting to pull up into a kneeling position (when I’m unloading the dishwasher and he tries to pull the knives out of the silverware rack).  And best of all, he crawls all over the place. So quickly that at preschool this week, he crawled out the door and into the hallway three times before I found him and caught up to him. Dude is fast.

Crawling! Something we were told he'd never do. Take that, bitches!

Crawling! Something we were told he’d never do. Take that, bitches!

In summary, he’s doing amazingly well, and I am so incredibly proud. This is what SB looks like for us at this moment in time.

Which is to say, better than I ever thought possible.

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As long as it’s healthy. But what if it’s not?

Six months into our pregnancy with Henry, after our spina bifida diagnosis, my husband and I would make regular treks up to Park Ridge to see the Maternal-Fetal Medicine specialist, who kept us abreast on how the baby was doing in-utero. Since I’m extroverted and I adore small talk, I started chatting up the receptionist as we were filling out some paperwork, post-appointment. At this point, we had already been told by two separate doctors that Henry would be totally paralyzed from the waist down.

We started talking about her kids — three girls! — and I asked her if she preferred girls, or if she might try for a boy. We both quickly agreed that the baby’s sex wasn’t really that important — boy or girl, they were blessings.

“Oh, I like girls, but it doesn’t matter to me!” she exclaimed. “You know, as long as they’re healthy and running around!”

I felt it and Lou felt it, simultaneously — that hot knife of grief in the belly. I think he actually winced. I laughed, bewildered, and said something like, “LOL I KNOW RIGHT? HAHAHA OTHERWISE IT WOULD BE AWFUL, WOULDN’T IT, IF THEY COULDN’T WALK???” and then slumped back to the waiting room with my paperwork.


Later, on the ride home, Lou bristled. “She works for a maternal-fetal specialist,” he grumbled. “What was she thinking? Healthy and running around? What the hell?”

That phrase has haunted me, ever since we found out that our child would be born with a birth defectAs long as it’s healthy! People chirp at you, when you talk about finding out the gender. Boy? Doesn’t matter! Girl? Who gives a shit! Nothing else matters but perfect health! And once you discover that your kid isn’t healthy, it almost feels like a threat.

Because what if it’s not healthy?

What then?

That phrase terrifies me. Because we’re talking about our children — an arrangement that’s supposed to be unconditional — and as long as they’re healthy! is alarmingly conditional. Everyone’s happy for a new baby and congratulations are in order — but only under certain criteria. Right? And if baby doesn’t meet that criteria, well, all bets are off. All the congratulations vanish. Your support system bottoms out from under you. People start whispering. Doctors start talking about going in another direction. Changing the course of the pregnancyDisrupting the pregnancy. Termination. Because, clearly, if your child isn’t picture-perfect, a SWIFT DEATH is preferable.

It’s not wrong to want a healthy baby, make no mistake. Nobody prefers a medically fragile baby. Nobody wants to see her child suffer. So we wish for health. We make ominous, defensive, vague statements. Everything will be okay — unless it’s not! 

Let’s retire that phrase. Shall we?

It’s time to stop putting health on a pedestal.

Is health important? Uh, yeah, duh. Is it the summit of our human experience? Is it the sole quality off of which we should determine the worth of our children? No.

We need to move past this fatalistic attitude we have that says a life with a disability is tragic and hopeless. We need to get over the idea that a handicapped baby is better off dead. We’ve had handicapped presidents, for God’s sake. We’ve had handicapped olympic medalists. One of the most sought-after motivational speakers on the planet has neither arms nor legs, and I’ll bet you a hundred bucks he’s smarter and more physically active than I amFor the love of God, one of the most poetic and well-written books in existence was written by a man who could only blink his left eye.

And when we say as long as it’s healthy!, we’re negating all the unlimited potential we have as human beings. We don’t need to be “healthy” to be heroic. And we shouldn’t need to be able-bodied to be considered human beings.

And when we say as long as it’s healthy!, we’re telling parents that our support as a society is conditional. Have a healthy baby, and you’re golden. Come back from your ultrasound with a special needs diagnosis, and we’ll need to start discussing your options.

Come on, society. We’re better than that.