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.

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.

A Henry Kind Of Update

Wow, are you tired of reading about my panic disorder yet? Let’s switch gears, shall we?

We are coming up on one year of Henry’s Spina Bifida diagnosis.

 

Last year on November 7th, during our gender ultrasound, everything changed. We learned that our precious son had Spina Bifida, and despite being a writer, I cannot convey my devastation. Or my panic. My first reaction went from no no no no not doing it lol sorry to how am I going to deal with this? Paralyzed? Incontinent? Wheelchair? Shunt? Surgeries? The possibilities were infinite and completely overwhelming. Foremost in my mind was the certainty that because my son had a “birth defect,” our lives would be miserable and tinged with sadness from here on out.

 

So, are they? Are our lives sad and burdensome and full of suffering?

 

Judge for yourself:

 

As you can see, this poor child is miserable.

 

One of the things that terrified me before giving birth to Henry was that there was really no “face” of Spina Bifida. If you did a Google images search of Spina Bifida you would see a) aborted or stillborn fetuses, b) gruesome meningocele lesions, and c) pictures of John Cougar Mellencamp because apparently he has a very mild form of SB called occulta. You can see why this was such a confusing time for us. When we’d try to “research” Henry’s birth defect on Google, there were few families we could look to as an example, despite Spina Bifida being one of the most common birth defects in the world. I can’t find it now, for the life of me, but when I googled “spina bifida stories,” the first one I came across was a little girl who had actually died during her myelomeningocele closure as a newborn (something that is very, very rare). Needless to say, I was all:

 

So nearly a year later, I am happy to say that Spina Bifida has a new “face” for us, and hopefully for everyone we know. It’s a seriously cute face that is perpetually smiling, with super chubby cheeks and huge blue eyes. I don’t know where I keep getting these blue-eyed children because my family is Italian as hell, but I digress.
I struggle with telling people what Henry can and can’t do at this age, because I fear that they’ll think of it as some unbearable hardship. Henry has had two surgeries in his young life — one to close the opening in his back, and one to put a shunt in his head, in order to control his hydrocephalus. Although he can sit up mostly unassisted and meets pretty much every developmental milestone, for some reason he still has not been able to roll over on his stomach by himself. (His hips are at a weird angle, so it’s hard for him to maneuver himself onto his stomach. It’s one of our goals for physical therapy.) He’ll need surgery and casting to correct his (adorable) clubbed feet. I’m not sure when he’ll crawl. His prognosis for walking is good, but it’s not a given. We don’t know if he’ll walk with assisted technology or use a wheelchair. But he can definitely move his legs purposefully and he has feeling in his legs and feet, which is a far cry from what our doctor’s initially told us he would be able to do.
Aside from the doctor’s visits and learning how to navigate the healthcare industry, this kid is surprisingly low maintenance. Recently we learned (for a lot of complicated reasons) that we’re going to have to start intermittently catheterizing him throughout the day. What I expected to be super inconvenient and devastating and a huge pain in the ass was really more like

Meh, whatever.

Basically, from here on out, we have to stick a tube in his pee-hole four times a day, and it’s surprisingly not a big deal at all. Funny, because when I was pregnant with Henry, the thought of catheterizing a baby scared the shit out of me. I would think about it and get cold and sweaty and immediately overwhelmed. It was firmly in the category of “things I couldn’t do.” And guess what? I can do it. I’m still practicing, and sometimes I mess up, but it doesn’t hurt him. In fact, he actually seems to like it. Sicko.
I think even now I have what I’d call “able-ist” leanings. When people ask me how Henry is, I immediately say “he’s totally like a normal baby!” I try to distance him as much as I can from his perceived defect, because I just can’t stand the thought of someone thinking he is lesser-than or deficient in any way. I have to stop saying he’s “normal,” because he isn’t. He’s got a shunt and now he has to pee through a pee-tube. But I guess what I’m trying to say is that you wouldn’t know that just by looking at him. He has a disability, but he’s not miserable. Our family isn’t miserable. Managing his disability is sometimes a lot of work, and a lot of doctor’s visits, and a lot of phone calls to the doctor’s office to get referrals, and that’s a headache. But at worst, it’s a mild annoyance.
Believe me when I say we are blessed to have this child. He has made my life better in every conceivable way. And if I had to choose between having this child with Spina Bifida and not having him at all, I would go back and pick Spina Bifida again, and again, and again.
October is Spina Bifida Awareness month, and this is what I’d like to contribute: If there’s anything you need to be “aware” of, it’s that Spina Bifida can be hard. It can be grueling and annoying and complex. But it can also be full of joy and blessings.
 It’s not easy. But it is so, so worth it.

Pediatrician visit

I’m not a disciplined writer. I just write when I have the compulsion. It comes and goes like motion sickness. I’ll be sitting on the couch and it will just come up in a glut, like vomit, and I’ll have to run to my computer to get all the words out. Sick.

We went to the pediatrician on Saturday and they did the whole well-child thing for both the kids, back-to-back. The doctor did a once-over on Henry and checked in his mouth told me he wasn’t teething when he very obviously is. Then he moved onto June. The doctor checked her ears, and her eyes, and down her throat, and then her chest.

And her chest.
And her chest.
and her chest.

And he checked it for what seemed like forever.

What I was doing, in the meantime.

I closed my eyes and started saying Hail Marys. Oh there BETTER not be a problem, God, I kept thinking. I kept making eyes at Lou, who was calmly and comfortably sitting next to me, and he reached out and squeezed my elbow, not understanding or not acknowleging how long the doctor was taking to examine her chest. And when the doctor motioned to June to lay down on mommy’s lap while he listened to her heart more, I felt the familiar wave of anxiety and hot sickness like on the day that we went in for a fun little gender reveal ultrasound and got hit with a mack truck that is Spina Bifida Myelomeningocele.

I fall into this little trap sometimes where I think that because I had a child with a neural tube defect and we endured one month in the NICU and countless other problems, I’ve already gone through the worst thing that can happen to me, and therefore I’m immune from all other bad things that could happen. Like the chickenpox. I also fall into this trap where I jump immediately to the worst possible conclusion — probably a defense mechanism of some sort. Or just rampant anxiety. I can’t watch Monsters Inside Me or Dr G: Medical Examiner for precisely this reason — I’ll start to get convinced that every slight headache is a horde of maggot larvae hatching in my brain, or something. So when the doctor hovered over her chest and listened, and listened, and then made her lay on my lap and listened again, and again, I went from thinking hmm, he’s awfully thorough to welp, better call the Make-A-Wish foundation. 

We’ve had a rough year. A rough, rough year. Henry’s diagnosis. My grandpap dying. Mental health problems. The NICU. A new family member. A mild car wreck. This nurse called us up and told us we qualify for food stamps, for the love of God, and then called my precious boy an adverse outcome. So when the doctor checked June’s chest and frowned slightly, I closed my eyes and thought are you FUCKING kidding me right now, God? 

I’m not proud to say that my first reaction was one of utter anger and disbelief. On the outside, of course, I was completely stoic. I’m great in a crisis. I can shut down and deal with the situation at hand and stave off an emotional collapse for a long, long time. So I asked detailed questions and didn’t lose my cool. But on the inside I was fuming. I alternated violently between thinking, Thank you, God, for our health, for these children; we are so blessed. You’ve blessed us immeasurably. Whatever the outcome of this, thank You, thank You for these children. And then in the next minute I’d think, you know, God, I haven’t had dinner yet, and maybe you should take me out to dinner first before you FUCK ME. Are you kidding me right now? These children are my life. Why are you doing this to me? I already have one ‘sick’ child. You cannot do this to me again. YOU JUST CAN’T. 

And I do realize how selfish and disgusting I sound, thanks. Because really, with Henry’s Spina Bifida, it’s tempting to think of our family as this wretched gang of Dickensian street urchins that has been, as of late, anyway, really down on their luck. In reality though, we have it pretty great. In reality, Henry is pretty much just like any other four-month-old, which is extraordinary considering he’s developmentally more like THREE months old, and he was a month premature, and he has this whole hydrocephalus and spina bifida thing going on. But he’s really awesome. And he seriously has the best attitude of any baby I’ve ever met — perpetually happy, talkative, social, smiley. And really, we have had far more than our share of blessings: a steady paycheck, excellent health insurance, a roof over our heads. Lou and I are blessed with an awesome marriage and there’s not a day that goes by — not one day, since the start of our relationship six years ago — that he doesn’t squeeze my hand and say thank you for being my best friend, and my wife for life. (This dude has been calling me his wife since the first month we started dating, I swear.)  I mean, we’re ridiculously spoiled. But that doesn’t protect me against the stabbing fear in my stomach when the doctor lingers a little too long over my precious baby’s chest and knits his eyebrows together. It doesn’t shield me from this rush of terror and anxiety and absolute anger. I spent the rest of the day simmering in a silent fury, wanting to punch God in his stupid face, wanting him to come down and explain Himself and just what the hell He means by scaring me like this and wanting to tell Him that there better not be anything wrong with my baby. Better not. Or else. OR ELSE. Pretty intimidating, I know.

So, the doctor finally stopped listening, at which point I was almost in tears, and said that what he heard was a slight heart murmur, and that he was referring us to a cardiologist. Cool. Except not.

To be honest, I want to be all

but then I’m like nevermind, Jesus, you’re a terrible driver. You’re driving me right into a panic attack.

Prayers, please, that it’s totally nothing?

It’s a Wonderful Life

Three years ago, I was fighting off panic attacks and an IBS flareup, stepping into my wedding dress, trying not to mess up my hair. It was gorgeous outside, and warm, and it smelled like summer. I had hydrangeas in my bouquet. I was getting married.

Despite my deer-in-headlights look, I was actually pretty excited.

Our wedding was the bomb, despite the anxious diarrhea and the uncontrollable, nervous sweating (TMI, but such is life with an anxiety disorder and PTSD. Did I use enough acronyms in that sentence? LOL WTF BBQ). The best part about our wedding was that Lou and I had been engaged for three years at that point, and as Catholics we had (somewhat reluctantly) agreed not to live together before marriage. Now was the culmination of three years of anticipation and we could finally finally finally FINALLY start living together (and, you know, like, live together, wink wink nudge nudge I’M TALKING ABOUT SEX SORRY FAMILY WHO READS THIS.) That day was exciting in so many ways. And also there was steak. Lots and lots of steak. And almost every member of our family. And our close friends. Dancing and eating steak. So maybe the best day ever?

(We had some pretty delicious chocolate cake, too. Just saying.)

Three years later, I’m nursing a sweet 3-month-old and my almost-two-year old is taking a nap. My life is so full and rich. Metaphorically rich. We’ve had at least $2k in car repairs in the past month and we’re still recovering from the month of unpaid leave that Lou took from work when Henry was born, and for the love of God, you guys, if you don’t have an emergency fund start one right this second because we would be so unbelievably screwed and in debt without one. But I digress. Apart from car repairs and NICU stays and other “character building” life events, our life together is really quite rich and full and happy.

I don’t write about Lou a lot on this blog. I’m hesitant to over-share — primarily because I think it would embarrass him, but also because our marriage is the most important thing to me in the world, and what we have is so unique and precious I’d probably ruin it with words. And try as I might, there’s no GIF to describe how wonderful of a match we are, or how happy he makes me, or how he helps me be a better person, in spite of myself. Nevermind, I found one:

We’ve started going to counseling together, every other week. Not because our marriage is in shambles or we can’t get along — on the contrary, we get along so well that he can make me laugh even when we’re fighting and I’m screaming at him in frustration — but because we need help working out some stuff that we can’t work out on our own. I can’t tell you everything. It’s really not even my story to tell. But I want to say publicly that I am so proud to be with someone who values his well-being and our marriage so much that he will voluntarily go to a counselor and do something that makes him incredibly uncomfortable — talk. About himself. To a stranger. And he does that for our sake. That is love.

Did you know when I was little — maybe nine or ten? — I wrote in my diary a list of qualities I wanted God to find for me in a husband. I wanted my future husband to know Jesus. I wanted him to love children. I wanted him to be hilarious and smart and loving and talented and crazy about yours truly, of course. Most of all I wanted him to encourage me, and just let me be who I am, warts and all, and see me at my worst and love me in spite of myself. And like every single other time in my life, I totally didn’t believe God would give me what I asked for as a child, in earnest. But He totally did. When we got married, in church, in front of the Eucharist, before hundreds of family members and friends, it was like God was saying, see how much I love you? I gave you all the things you asked for — and things you didn’t even know you wanted yet. And then, with our babies, it’s like our marriage is the gift that keeps on giving. I seriously sometimes want to say, okay, enough, God! This is too much! It is RIDICULOUS how blessed I am! What gives? 

Three years after I put on that super heavy, super tight dress (and subsequently had a panic attack about not being able to get it off in time if I wanted to pee), I’m legit living the life that I dreamed I would someday live. I have two beautiful babies. They are hilarious and cute and I get to stay at home and enjoy every second of them. I get to write in my spare time and just have a tiny little perfect life with my best friend and our kids. It doesn’t get any better.

My life is the bomb and I have Lou to thank for it. It doesn’t get any better than this.

Thank you for our wonderful life, Lucius James!

(“Sweetie, can I write about our anniversary and how we’re in counseling right now?”
“Not a problem at all. If you wanted to throw in something about my weiner, that’d be cool too.”)

What to expect when you totally weren’t expecting Spina Bifida

So.

You just got back from the doctor’s office with some upsetting news: Your child has Spina Bifida. Rightfully, you’re terrified. You feel like a pile of bricks was just dropped on your head. If you’re anything like me, this is the most upsetting news you’ve ever gotten in your life, and you’re so stunned, ashamed, and guilt-ridden, you can’t imagine how you’re going to get through the next few months intact. Forget about raising a kid with special needs — you’ll be lucky if you can get through the next ten minutes without crying or throwing up.

Spina Bifida? LOL NOPE BYE.

That was me. That was totally me. If you’re reading this, and you feel like I once felt, believe me when I say I wish I could give you a huge hug. Instead, hopefully I can share some thoughts and questions I had on the day my son Henry was diagnosed, the day we were thrust into the world of Spina Bifida, whether we wanted to be or not (hint: not). We had so many questions that day — here are some of them that I’ve learned the answers to.

Is he going to survive?
The most encouraging thing about Spina Bifida is that the survival rate is fantastic. Ninety percent of people born with Spina Bifida live past the age of thirty. Are you kidding me with that survival rate?

Initially, the doctors made it sound like our son Henry was going to die immediately, in utero. He was a  “severe case,” apparently, and you can imagine our terror when the attending OB remarked, “I can’t even see his cerebellum. There’s just so much spinal fluid.” Not exactly encouraging. When I finally got the balls to do a Google search on SB a couple of days later, I was shocked. Ninety percent of people with this thing not only survive, but survive well into adulthood? I can play those odds.

Was this my fault?
Genetics can play a big role in developing Spina Bifida, and isn’t that kind of the ultimate “your fault”? Just kidding. It was probably just some fluke. You’ll never know what caused it, and that is maddening.  You can opt for genetic testing to see if you have a family history, or you can take folate to maybe prevent it, but we don’t know for sure what causes it. That’s just the facts, jack. Try not to dwell on it.

The doctor said the baby would have no quality of life. 
Join the club, our doctor said that too! The more I research about SB, the more people I meet who have SB (including our boy), the more I realize that this is a complete and total myth, especially in countries with sufficient medical access. For children who receive early treatment and management of their Spina Bifida (things like proper shunt placement, antibiotics, etc), their options are limitless. People with SB can play sports, they can have careers, and they can have dynamic, fulfilling lives.

Please don’t let the medical community tell you what’s what. The doctors and nurses who have treated Henry and I have been angels, but they can’t speak his or anyone else’s quality of life. And they can’t tell the future. According to our doctors, Henry was supposed to be completely paralyzed with no cerebellum. Guess who kicks his legs, has sensation in his feet, and totally has a cerebellum?

This guy.

Early on, I made the mistake of thinking that doctors and nurses were the ultimate authority when it comes to this defect. I’ve told maybe two dozen nurses that Henry has Spina Bifida, and do you know what the most common reaction is? It’s: “Oh, I’m sorry. That’s horrible. What’s Spina Bifida, again?” Several times in Henr’s short life I have run into trained nurses who don’t even know what spina bifida is. Like me, it was something they heard about in a med ethics class one day and then promptly forgot. Or, if they do remember it, they know it as a cluster of symptoms they studied in a textbook once — probably a textbook that uses phrases like “adverse pregnancy outcome.” You can read all about the symptoms and the statistics, but absolutely none of that is going to tell you about the little person you’re growing.

This pain is so bad I can barely breathe.

Yup. Try to breathe anyway. Take a deep breath, count to eight, and let it out slowly. Try not to think too far ahead. Just concentrate on breathing — in for eight seconds, out for eight seconds. Take it minute by minute.

The only thing I can suggest is to just honor your feelings as they come. We found out Henry had Spina Bifida on November 7th, 2012. I don’t even remember anything until the next week, other than sleeping a lot, and crying, and googling stuff, and going to the Children’s Museum so June could run amok and we could just wallow without having to entertain her. I was in a fog for quite a while, and it wasn’t until I started talking about it, writing about it, and processing it that the fog started to lift. And for the next four months I vascillated between outright denial, ridiculous optimism, and flat-out refusal.

First:

Nope. Sorry. Not happening.

Then:

SHUNTS ARE WEIRD LOOKING MY LIFE IS OVER

And then:

Just gonna research disability income JUUUUST KIDDING NOPE

And finally,

Acceptance.

Nature is cruel in that even when you think you hurt so much you’re going to die, somehow you never really manage to actually die. And then things get better. So just keep breathing.

I want to make this go away.

The last thing I want to do is judge another mother who’s heard this diagnosis and is feeling unimaginable pain. When I heard his diagnosis, you better believe there was a part of me that wanted to just make everything go away, and the quickest, most convenient way to do that is just get it “taken care of.” No doubt, your OB offered this as an option — quick, easy, painless.

You want to terminate because you’re in unbearable agony and the Special Needs World is a terrifying place that no person in their sane mind would willingly choose to travel. I understand that. God, do I understand that. A few days after we learned about Henry having spina bifida, I spotted very lightly, and to my horror, my first reaction was relief. Oh, I thought, I’m miscarrying. Surely it wouldn’t be a blast to suffer a second trimester miscarriage, but at least I wouldn’t have to go through the c-section, the myelo closure, the agony of waiting – of not knowing whether he’d survive, the heartbreak of trying to mend his broken little body into some semblance of a normal life. It almost felt like a reprieve. I hated myself for thinking that, but I’m gonna go ahead and keep it real: Having a baby with a neural tube defect is like getting the wind sucked out of you over and over again, and that kind of pain is simply unsustainable.

But let me encourage you, in the most respectful way possible, to carry on with your pregnancy, and have faith that even though it’s terrifying at the moment, one day it won’t be. One day you’ll actually be able to say the words “SB” without vomiting. Words like “shunt” and “wheelchair” will, at first, bring you to your knees. But you want to know something amazing? After a while, those words lose their sting. And slowly they become tolerable. And eventually, you’ll learn to LOVE those words. When Henry was in the NICU, I would pray every night that he wouldn’t need a shunt. I was terrified of the shunt. Then slowly his little head started to grow bigger and bigger, and soon it was obviously clear that he was going to need some help draining the spinal fluid in his head. Surprisingly, the doctors were super conservative and wanted to wait it out, so we monitored his head growth for what seemed like forever — two weeks, in actuality. And by the end of the first few days I was like, god damn, his head is huge! What are we waiting for? Let’s do this shunt already! I turned into the shunt’s biggest cheerleader.

My point is this: It’s not always going to hurt like total hell. It will slowly become bearable. And by the time your little friend with Spina Bifida is born, you will absolutely love him to death. And now Spina Bifida will have an adorable little face. And strangely it will seem manageable. Still scary. Still stressful, at times. But doable. You’ll have a precious, sweet little squishy who just so happens to be dealing with SB. You’re not giving birth to the defect itself.

My doctor says I should medically terminate.
From reading the stories of other people who have chosen “medical termination,” their despair is almost palpable. They were given absolutely no hope by their doctors and ultrasound technicians, and I want to tell you that that is a big fat lie. If your doctor has given you a horribly bleak prognosis, which has happened to so many of us, let me share something uplifting:

I had a lady from the county call me the other day and the first thing I noticed was her tone of voice. It was soft, hesitant, almost sorrowful.

“The NICU sent us your discharge information,” she said, “And we hear you had an adverse pregnancy outcome.”

My first thought was, he died? And then my next thought was, adverse pregnancy outcome? You mean Henry? 

The knee-jerk reaction to Spina Bifida (and to suffering, in general) is to shut it down, take it away, and to think of it as a horrible, insurmountable tragedy from which you and your baby will never recover. If I had talked to this woman the day of Henry’s diagnosis, I would have perhaps agreed that yes, this is a horribly adverse outcome — this is just about the most adverse thing in the world, and I’d like to die now. But three months after his birth and spinal surgery? There’s not an adverse thing about him. Except that he puked down my cleavage this morning after I fed him. We’re doing fine. Really.

What about his quality of life? Won’t he suffer?

Spina Bifida can really suck. Don’t get me wrong. Your kid with Spina Bifida will have different obstacles than a developmentally typical kid, and he’ll likely have several corrective surgeries and maybe even some delays. So — will your kid suffer, at some point? Yes. Will you suffer, having to watch him undergo surgery, having to watch him hurt, or lag behind? Yes. It’s inescapable. When you get this diagnosis, it’s almost like suffering has latched onto you and now there’s no way out of it: If you choose to abort, you’ll suffer the emotional fallout of abortion and the “what-ifs” that go along with it. If you carry to term, you’ll suffer in other ways — the ways I’ve already listed, and in not knowing what kind of life he’ll have. You’re going to suffer, and you’re going to worry.

Welcome to parenthood. When I was pregnant I worried that Henry would die in-utero, or that he’d die from the myelomeningocele closure upon birth. Now I worry that he’ll have a shunt malfunction or that he’ll start needing a feeding tube, as some kids with SB do. With my neurologically-typical daughter, I worried that she had African Sleeping Sickness when she’d take a longer-than-usual nap. I worried, when I let her cry for five minutes in her crib, that she would develop Reactive Attachment Disorder and never bond with me properly. I saw she had a bruise on her leg the other day and my first thought was OMG LEUKEMIA. All I do is worry. Eighty percent of my day is worrying about what kind of various ills my children will succumb to, and the remaining twenty percent is vacuuming goldfish crackers out of the sofa cushions. It’s actually strangely comforting to know that even without the Spina Bifida, I’d be a total anxious mess. You’ll suffer, he’ll suffer, we’ll all suffer. We’ll suffer with the Spina Bifida or without it. Get used to it.

Is there anything I can do?

Fetal surgery is an option. Before 25(ish) weeks, doctors can actually close the myelomeningocele while the baby is still in the womb! And although it carries a degree of risk, the benefits can be life-changing. Google it. Research it. We chose not to have the surgery, for a host of reasons that I’ll probably write about someday, but it’s certainly an option.

What does Spina Bifida look like? 

Do me a favor and don’t look on the google images for kids with Spina Bifida. Google images is not your friend. MOST of the pictures on Google images are a) fetuses with SB who have been aborted and are bloody and mangled, and b) pictures of open myelomeningocele lesions, which are gross to look at and will be closed up right after the baby is born anyway.

If you can, go on Facebook and join some support groups, and you’ll see the face of SB soon enough. There are parents all over these boards just clamoring to show you pictures of their child and to encourage a fellow SB mom. And I’ll bet you dollars to donuts (whatever the hell that means) they will also have a story about how a certain doctor said that their child would never do “x” and sure enough he did it anyway. They’ll show you pictures of their precious children, and you’ll see that when they smile, they smile right from the bottom of their soul. Like my dude.

Missing half a spine, but still a badass

Fifty Shades of Cray

How do I even begin?

If you know me in real life, you know that Henry is here. And he’s beautiful.

That was the thing that shocked me the most when he was born, exactly seven weeks ago, on February 28th: He was — and is — just gorgeous. We have video of me in the operating room, and one of the obstetricians is holding Henry up for me to see him, and all I can do in my drug-addled state is lie there and sob and yell, “He’s so BEAUTIFUL! Oh my god! Look at you! Look how beautiful you are! Holy SHIT!”

Me, seeing Henry for the first time, whilst on Valium

I only saw him for less than ten seconds before they whisked him away to the NICU to prepare for his myelomeningocele closure, but I was positively delighted with what I saw: Huge cheeks; an angry, smashed face; red fuzz on the top of his head. And he looked just like my husband. Ugh, I thought, relieved, thank God I didn’t have an ugly baby. 

I mean, come on. COME ON with this preciousness.

My heart skipped when I saw his feet — tiny, misshapen. He definitely has spina bifida, I thought. He has clubbed feet. He’s here. This is what spina bifida looks like, and I can’t un-know it. There’s no going back. But it was just a twinge of fear, and then it was gone. I don’t know if it was the copious amounts of anti-anxiety drugs the anesthesiologist kept siphoning into my body, or whether I was feeling the prayers that I had been begging people for for months at that point, but when I finally saw him, when I saw the opening in his back and his crooked little feet, all I felt, besides the tiny twinge of fear, was elation. Finally, I kept thinking. He’s here. After months and months of anticipation, at least now we could say that the hellish anticipation was over. Now we could start the life-long process of getting to know him and learning how to navigate his diagnosis. Now we could stop floundering in our helplessness and actually do something.

But I was stunned by his beauty, and shocked, to be honest, by just how normal he looked. My husband and I kept exchanging confused glances and saying to each other, “He looks gorgeous. He’s great. He looks like a normal baby.” My first impression of spina bifida was that this must be some messed up shit, since the nurses and the doctor who told us his diagnosis could hardly contain their devastation as they relayed the news. By the looks on their faces, I got the impression that he’d be either dead or horribly deformed. I thought his clubbed feet would look like little mangled chicken drumsticks. I thought his hydrocephalus would make him look like one of those aliens from Mars Attacks. I was bracing myself for a full-on Quasimodo baby, and I was shocked to see that he was a beautiful baby, not merely the sum of his various physical ailments. He wasn’t a diagnosis. He was a hearty, sturdy, strong little boy.

oh it’s just my hydrocephalus, NBD.

Soyeahanyway. He’s gorgeous.

I didn’t see him for the next 13 hours or so. I wish I could say it was really hard on me and I missed him dearly and was clawing my way down to the NICU to see him, but in all honesty, I was just tired and slightly high and greatful for the opportunity to take a nap and get something to eat, for the first few hours anyway. FYI, when you have a c-section, you’re not allowed to eat for twelve hours before surgery and you can’t eat after surgery either until you pass gas — whenever that is. Uhhh …

The nurse told me that and I was like, haha, yeah, so can you get me a cheeseburger? And then I realized she wasn’t kidding and I started hyperventilating. Say what now? What if I’m not particularly gassy? What if I don’t fart for a week? Girlfriend just shrugged at me and said they’d give me Bean-o, but until I farted they would only let me eat broth. BROTH. I almost fainted. On top of that, I couldn’t see the baby until I could walk to the bathroom and pee on my own. After twelve hours of mandatory bedrest, I was a peeing, stumbling, farting fool, rambling about my baby and NICU visiting hours and cheeseburgers.

Me, on my way to the NICU

And can I just say, apart from the not-being-able-to-see-Henry thing and the whole starving-and-willing-myself-to-fart-for-fifteen-hours thing, this c-section was truly an amazing experience. I can’t even remember how many times I literally begged my friends and family for prayers — not just for Henry, but for myself; that I, with my history of PTSD and my phobia of all things medical, would somehow miraculously escape being traumatized from having an inevitable (yet very necessary) c-section. And I want to say that I felt those prayers. I felt every single one of those prayers covering me and soothing me and encouraging me as they wheeled me into the freezing OR and jabbed me in the back with a needle. I thought I would be crying in fear, and I was completely calm. Steady. Ready to meet my baby. To my amazement, I didn’t cry once. (Although I did scream MOTHERFUCK! when they gave me the spinal block, much to the surprise of the attendings.) It may not seem miraculous to you, but emotionally I came out of that operating room completely unscathed — something I attribute totally to the power of prayer. There is simply no earthly reason I — someone who cries like a bitch during a routine cervical check — should have been that calm. (Other than the sedative they gave me, I’ll admit, but I’m talking BEFORE that. Unless the nurses slipped something in my IV and then it was probably valium AND prayer, which is also cool. But no seriously, it was like Jesus reaching down and giving me a big bear hug, and I cannot thank you people enough for that gift because it allowed me to be fully present when I met my son for the first time. What a precious, precious gift.)

right after his myelomeningocele surgery on the day he was born
Recovering like a boss

Oh, and compared to my vaginal birth with June, an elective c-section was a cakewalk. I didn’t even have to move off the bed. All I did was lie back, request a shitload of drugs, and let everyone else do the work. No pushing, no bullshit hypnobreathing, no screaming at my husband to apply counter-pressure on my back. Just a lovely drug cocktail and some nice warm blankets afterward. I know it’s surgery and super serious and I shouldn’t be flippant at the idea of very serious life-saving surgery, but for real, I’m lazy and I didn’t have to do any work; I would not be bummed in the slightest if I ended up with another elective section. Bring it!

Henry would spend the next 25 days in the NICU — an eternity for us and a drop in the bucket compared to some other babies in there — and he blew us away with his progress every single minute he spent in there. Like I said, we didn’t know (and still don’t know) the extent that spina bifida will affect his life. Some children can’t urinate on their own and need to be catheterized. Some have to be fed through GI tubes. Some can’t breathe on their own. Some are severely learning impaired. We simply don’t know how his diagnosis will manifest itself in his life, and there’s no GIF to convey the anguish I felt after his birth, wondering whether he would be one of those kids who would need extensive interventions just to breathe and eat.

(Okay, this GIF is pretty close. And this one.)

But like I’ve said before, Henry does whatever he wants, like a boss, and I have a feeling he’s going to blow everyone out of the water with what he can do, even if he has to do it on his own sweet time. Despite my fears, Henry survived the surgery. And then Henry successfully weaned off the ventilator. He ate like a total champ. He downed twenty mLs of formula, then thirty-five, then fifty, then 105 mLs (4 ounces, I think) per feeding, for every feeding, after that. He opened his eyes. He watched us. He smiled. He slept. He breathed. He ate some more. He had no apnea spells. He had no seizures. And to my absolute delight, he passed his urodynamics test with flying colors, which means no catheters for this boy, at least for the time being. Prayer works, yo. Your prayers worked. He healed. I healed. We spent the next month traveling back and forth from the hospital to deliver milk, to visit him, to finally hold him, to marvel at his progress. And every moment we weren’t at the NICU, we were at home with June spending time with her, trying to survive with part of our family missing, pumping breast milk and sleeping and watching a lot of Pawn Stars when we weren’t en route to or from the hospital.

There is so much I could share with you about the NICU, and how scary that time was, and how special it was at the same time, and how absolutely cray. I probably need to get some distance from it first before I reflect on it, but what I can say was that we were blanketed by prayer. Even though we missed our boy, even though we wanted him home with us and there was more than a few nights I cried being away from my little guy, I personally had the most amazing peace. I was assured by faith that he would be okay. And, selfishly, I was so thankful for the extra rest, for the opportunity to sleep through the night, for the assurance that Henry was being taken care of by a fleet of angel nurses and skilled surgeons. There was fear, but there was peace. And before long, we brought him home.

More updates to come.