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.

It definitely is. 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.

And if I can be frank, he'd probably suffer a lot worse from a partial-birth abortion that he'd inevitably have if you chose to terminate in the hopes that he wouldn't suffer.

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