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
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41 thoughts on “What to expect when you totally weren’t expecting Spina Bifida

  1. This is an amazing, REAL post. My babies don't have the kind of challenges Henry does, but you're so right, we ALL suffer. And anyone who says any different is trying to sell you something.And oh my goodness, I want to nom on his chubular little arms!

  2. This is awesome. I love your frank-ness (and agree with every word of it). My favorite is the caption of your little guy at the bottom, "missing half a spine but still a badass." Bahahaha!!!! Rock on!

  3. Oh my goodness! So glad I found your blog. My son has his first birthday this week, SB and all! Your post brought back so many memories. So now here I am, trying to silent laugh so I don't wake up my sleeping husband. Love. It.

  4. Great post! This is my passion as well…. telling people there is HOPE beyond the "poor prenatal diagnosis". OB docs do NOT—DO NOT—know much past diagnosis and what they learned 20 years ago in some medical book in school. Many DO NOT know about the huge strides made in the care and treatment of spina bifida. They do not tell you the other end of the spectrum… the side of a wonderful fulfilling life. My recommendation: talk to a NICU doc after your diagnosis. Best thing we ever did. He was able to give us much more accurate information on what our baby would be facing and what we would be facing. Here is a link to a video I made about our son Owen when he turned 5. It is long, but those who just received that "poor diagnosis" might find it encrouaging. http://www.youtube.com/watch?v=DbzCoYJ7V4s

  5. He is adorable and such a blessing! I'm tearing up reading this and so glad that I found your blog again through Dwija today. I was reading it a few months ago and lost the URL and have been thinking and praying for your family ever since. Thank you for this beautiful witness of life and love!

  6. I love you and your honesty and courage and pro-lifeyness (is that a word?). Seriously, you're awesome, and I can see why God gave you that freakin' adorable baby boy!

  7. My oldest daughter was suspected to have SB and when I went in for an ultrasound and amnio the ultrasound tech told me, "By the way I have Spina Bifida". I was floored, our doctor was acting as if our baby had died, he was so sure we would want to terminate if our baby had this "horrible" condition. My conversation with the tech gave me some real perspective. That daughter turned out to be fine, but my youngest was born with an undiagnosed defect and I just kept reminding myself, she's a baby first, and a condition second.

  8. Awesome post! My 4th DD had a rare undiagnosed birth defect and then when we were fixing THAT she was diagnosed with pediatric cancer. A rough road, but she is such a blessing to us!

  9. Fantastic post. I actually just started learning about Spina Bifida (simply from curiosity…and I'm just a mom) and this was delightful to stumble across. I know who I'll write to first if any of my future children are diagnosed. 🙂

  10. Adverse pregnancy outcome…… ?? Where do they get these terms!?I'm glad I never learned that in med school.I pray God will help me with my words when I counsel and give bad news, not so pleasant news to parents. Henry is cute. I take care a lot of kids with Spina bifida. I have one who plays basketball while riding his wheelchair! He's good. Pretty amazing!

  11. I'm reading this post through the eyes of my best friend from childhood who has Spina Bifida. It's certain that it's been no picnic for her: she had more than a dozen surgeries before the age of 10, faced a learning disability and social alienation… she still faces condescension, discrimination, and physical limitations. Even so, she has always striven for a fulfilling life: she is pursuing a Master's in psychology, dries a car, lives independently 500 miles from home, is in a long-term relationship, is planning a professional career. I feel like our culture teaches us too often that we should feel entitled to a physically typical child just by conceiving. Risk is a part of living and creating new life and it's something you sign on to whether you want to or not. Parents need to honor and process their feelings, but at the end of the day you are still bringing a human being into the world who may have her own opinion on the matter. It's unfortunate that doctors and nurses would set the tone for a new life with such pessimism and misplaced pity. Thank you for sharing your experience so honestly, special needs parent or not, we all face these risks and we all benefit from hearing about your journey.

  12. Keep going. I have Spina Bifida. When I was born, my parents were told that I wouldn't survive, and that if I did, I'd be a cabbage (their word) and wouldn't be able to walk or talk. As you can see, I'm not dead, and can talk. What you can't see is that I can walk, I am 54 years old, have two daughters of my own and one gorgeous granddaughter (so far) none of whom have any trace of Spina Bifida.

  13. My brother has sb and it is a severe one too. But as a miracle, our doctor is the best neuro surgeon specialized in sb in Turkey. He told us the risks but also said that it was a chance that my brother only does not feel under his knees. He even can feel his bowel movements. Now he can stand straight without any supports, he even can walk without support. The kids in his class do not even understand why my brother cannot run like them. They cannot see the difference 🙂 he is now just a kid who cannot run 🙂 that's all.

  14. Thanks for this post. My oldest, who is 8, has spina bifida and I could relate to every single thing in this post. His case is, by some measure, severe as well. But he's an awesome kid. He's totally paralyzed from the waist down but really smart. And, for the sake of other parents reading here, I will emphasize that there is NO WAY TO PREDICT outcomes when the baby is in utero. Our doctors were wrong about everything they predicted. I blog (not very often) about my kids here. http://www.thejohnstonkids.blogspot.com

  15. I have a nephew with spina bifida. It was not diagnosed in utero, but was a complete surprise on the delivery table (after a C-section). Their life has been packed with operations (surprisingly few on his shunt) and hospital visits. My nephew was able to walk with leg braces for a few years when he was young, but now that his upper body is so much larger than his undeveloped legs, he uses a wheel chair. And man, can he get around. He plays wheel-chair sports and even skis. He made Eagle Scout. He is extremely bright and has such a sweet and sunshiney disposition. Everyone loves him. He just completed his freshmen year in college. The suffering he has had to bear has made him mature, focusing on what is important in life and made him compassionate. We have a large tight-knight extended family and our lives would be a lot poorer without his life. He is a blessing.

  16. My story is very different, but I have learned the same lesson about the medical community. Warnings about possibilities that all involve pain. But they don't take the love into account. The love is always more powerful than the pain. I understand that they must warn us about the painful possibilities, but I don't understand why they are still surprised when we choose love. Haley Stewart from Carrots at Michaelmas sent me here, and I'm so glad she did!

  17. Great post. My boys have something different, but I understand a lot of the sentiment, right down to the nurses never hearing of the condition. It's hard not to worry about the future or get I overwhelmed in the needs of the present, but I don't know anyone with a disabled child who wishes they hadn't been blessed with their special child.

  18. I really appreciate the frank and gentle way you told your story. I take a medication that can cause SB – and even though I stopped taking it as soon as I found out I was pregnant – I was a nervous wreck at our first perinatologist exam. Like, really nervous. Like, crazy high blood pressure. My daughter didn't have SB, but it took a few more Level 2 ultrasounds to figure that out. Knowing it's a risk in every following pregnancy makes me spin. Thank you for writing this – thank you.

  19. Love this post! Thank you for sharing. Our littlest girl is going to be 5 in a month and a half, "SB and all," as one commenter above said. I remember that feeling of despair giving way to "on cloud nine" feeling when we our doctor said that it was very likely that Madeline would need a wheelchair all her life but there should be no reason why she couldn't live a very full and happy and "normal" life. Wheelchair…we could live with that after thinking she might not even make it (for some reason "fluid on the brain" was what my mind zeroed in on when given the initial reading of the first ultrasound). Yep, she doesn't even twitch from the waist down and can't bear weight even a little (I call her my ragdoll), but you should see those eyes light up when she races along in her wheelchair or dynamic stander, chasing her sisters and bossing them around! Wouldn't trade this journey for anything! She has brought such joy to our lives.Blessings to you and your little guy. He's adorable!

  20. You will find many blessings along the way, along with the trials. Remember that SB is only a part of them and they are like all of us in so many other ways. We are all different, and need help at many things in life. Give them your love, and enjoy their milestones as you would any of your children. Help them to be the best they can, and learn to adapt to make things in life enjoyable all along the way. Don't be afraid to start early and let them experience all that life has to offer. Join groups of parents with many different ages and degrees of disability related to Spina Bifida to get a real feel for how they are doing. Yes there are many trials along the way and huge obstacles that can come up, but they can make you and your child stronger if you deal with them and choose not to let them overwhelm you. Do not sell them short but find their abilities and maximize them. I have met and worked with many people who have SB and their families and am blessed to have them in my life. God bless and congratulations on having your child enter your life. I posted this before in other groups but the same applies to this blog. I'm a father of four boys, the youngest one was born with SB 28 years ago. He walks with afos and uses a wheelchair for distance and time. He was a track athlete at his high school and on a national wheelchair basketball team. I have been involved with people and families with a member who has a disability. I have been involved with adapted sports for over 15 years. I started an adapted sports camp about 8 years ago at the University of Northern Iowa, the only one in Iowa. It is called UNI Adapted Sports Camp, which is the groups name on Facebook,(FB). We teach athletes with a lower limb disability, good cognitive, and good upper body strength and good hand eye coordination how to do adapted sports. we just completed our camp and here are some links to media coverage and pictures of the camp. I will post a link to the camp on FB. IF anyone is interested, please feel free to join it to look at years of video and pictures of what our athletes and coaches do. Most of our athletes have Spina Bifida, because they can do these sports. This is not Special Olympics, but more like Paralympic events. They are both competitive and recreational. Here are some links to our recent UNI Adapted Sports Camp that I started back in 2006 and run annually. We had a great time this year with many tears when it was time to go home. Copy and paste links into a browser.Here is the link from KCRG TV. read the article also. http://www.kcrg.com/sports/local/UNI-Adapted-Sports-Camp-Provides-More-Than-Sports-Opportunity-211472151.htmlHere is an article from the Waterloo Courier.http://wcfcourier.com/news/local/young-athletes-compete-at-uni-s-adapted-sports-camp/article_893b13bd-71b4-5c7e-a1b3-5dd94195d9cc.htmlHere is the link to KGAN TV on their storyhttp://www.cbs2iowa.com/sports/features/cbssports/stories/uni-adapted-sports-camp-inspiration-campers-volunteers-943.shtmlJack used Dropbox to share some files with you.Click here to view UNI Adapted Sports Camp 2013.https://www.dropbox.com/sh/49c1rrw9z7f9q3j/fGJWGMZSZA?n=89721261

  21. I love your blog! You need to meet my daughter. She has a son with spina bifida born on January 13, 2013. It's amazing how similar your stories sound. And you're both hysterically funny. You could take this on the road. She has a blog, which she has neglected lately, but I'm sure she'll get back into it soon. I wish you joy and happiness with your children and your life. And thank you for sharing some of that with us. Good luck and I will continue to follow your blog because we all need to laugh in the face of adversity.http://valiantefforts.wordpress.com/

  22. "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."I am in no way saying "go forth and terminate" to those facing problems later on in their pregnancy, but I do suggest reading this interview with a late term abortion provider.http://thehairpin.com/2013/09/susan-robinsonI think the procedure is misunderstood, and I hope that reading about it may take some of the fear out of the (already heart-wrenching) decision process for parents who may need that option.

  23. the link you posted doesn't clarify any specifics about the procedure. Perhaps you'd be interested to hear that this 'procedure' includes dismemberment and decapitation. Here's an interview with another late term abortion provider who testifies in front of congress about the gritty details. http://www.lifenews.com/2013/05/23/doctor-who-did-1200-abortions-tells-congress-to-ban-them/ It's Life Site News, so take it with a grain of salt. But it's compelling.

  24. She doesn't explicitly describe the abortion, but her interview makes it clear that he babies don't suffer : "… Yes, that’s the first part of the procedure. We sedate the patient and euthanize their fetus, their baby, with an injection. The fetus passes away, doesn’t feel anything." and the baby isn't dismembered or decapitated: "I would say that most of these patients do decide to see and hold their baby". The site you're linking to describes a method that's all but outlawed in most places.

  25. That's the treatment the baby gets IF it's considered human. If the parents want it, they will get to say goodbye to it. If they don't, what's the procedure then? Can she be absolutely certain the fetus doesn't feel pain, if she gives it a lethal injection? Where/for what reasons is the D&X method outlawed? Please explain.

  26. Here we go: "In the United States, intact dilation and extraction was made illegal in most circumstances by the Partial-Birth Abortion Ban Act in 2003, which the U.S. Supreme Court upheld in the case of Gonzales v. Carhart."That's from the Wikipedia page on D&X. For more clarification on that ruling: "Additionally, a doctor may extract a fetus past the navel and then "disarticulate at the neck", which could fall within the terms of the statute even though it would not result in an intact body and therefore would not be an intact dilation and extraction." So no, in the US you're not going to find doctors decapitating fetuses. That's from http://en.m.wikipedia.org/wiki/Partial-Birth_Abortion_Ban_Act which is backed up with academic and journalistic sources. I'm glad that babies aren't being made to suffer, and I think that a lethal injection is a pretty surefire way to know it won't feel anything.

  27. Thanks so much for the clarification. I think I see what the confusion is…technically D&X is banned in the US — in theory, but not in practice. It's just a matter of semantics. To "disarticulate" a neck means to separate it from the head (that's dismemberment). Doctors can also "reduce the fetal calvarium," which means they can extract the brain from the skull. So, you're right, in all seriousness, that the kind of D&X I was referring to is outdated — the doctor is not completely dismembering the baby in-utero (anymore). Thank you, very sincerely, for correcting me! But is "disarticulation" really that much better? "You're not going to find doctors decapitating fetuses" — except we pretty much *are*, right? Crushing the skull and vacuuming out the brains?

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