Spina Bifida FAQ’s: Everything You Ever Wanted To Know About SB (updated 10/23/14)

21. And speaking of fetal surgery…..The Hand of Hope never happened!! I’m sure you’ve all come across this picture:

hand of hope

Stop Spreading This Meme

You’ve all seen it. Talks about how this baby was having surgery in utero to “cure” Spina Bifida. Then suddenly -gasp!- the fetus reaches out and grabs the doctor’s finger!! It’s a miracle!! …….except it’s not. It never happened. Oh this picture is real. There was a baby, there was a surgery, his hand is wrapped around the doctor’s finger. Furthermore, this kid exists. He’s still alive now. Some of my “in real life” friends know him and his family. So he does exist. But the picture is misleading. Mom and child were both sedated, so there is no way he could’ve reached out to grab the doctor’s finger. Instead, the doctor put the hand around his finger. Also, the doctor did not say what was attributed to him in this story, then start to cry. Never happened. And also, referring back to Fact #20, fetal surgery is not a cure. Baby was not cured. His paralysis stopped and did not get worse. But he was not cured. Please check snopes before posting things like this. I understand it’s a feel good story, but it didn’t happen exactly like that. Here’s the link explaining how it really went down.

22. This link is a YouTube clip of an interview about SB and is very informative and teaches a lot of the basics.

 Forrest braces

23. Humans are not the only animals that can have Spina Bifida. Meet Dot and Mickey

mickey

 24. I am aging faster than you. SB is not degenerative per se. That is, you don’t get worse and worse just because you have SB, the way you would with Alzheimer’s or Lou Gehrig Disease. And yet, docs at national conferences, world renowned experts in Spina Bifida, always talk about aging “in SB years”. That is to say, things that happen to people as they age tend to happen to people with SB faster. Because of how we’re built, and/or the way we walk/roll in wheelchairs, we develop things like arthritis sooner. Rotator cuff issues. Hip problems. This also applies to internal organs. Kidney damage may occur sooner. Heart and lung issues from scoliosis some of us have. We just age faster. Fact #2. Nobody knows how long a lifespan those of us who are shunted can have. I know people with SB in their 50s and 60s and 70s…..one of my best friends is a 67 year old woman who has more energy than I do! She is one of my heroes. Her enthusiasm for life and all the things she has accomplished, things she’s done in her life, backpacking through Spain, riding motorcycles, and not just as a younger person. She was around 60 when we all went indoor skydiving! ….I wanna be like her when I grow up. (no really!)

However, of these older people with SB, none have hydrocephalus. Had they been born with hydrocephalus in the 1930s, 40s and 50s, they probably would not have survived. No one knows the lifespan of people with SB who are chronically shunted. Since at least 80% of people with SB also have hydrocephalus, we are the first generation to survive in large numbers, thanks to the advent of the modern-day shunt in 1958. But now, no one knows what to do with us. Docs call us pioneers. But ask any adult, and we will tell you we feel more like guinea pigs because docs don’t have a clue about how to treat us!

25. Remember the SB fact where I said that 85% of us were also born with hydrocephalus? Well, that also means that before 1958, 85% did in fact die in a year or less. Because untreated hydrocephalus killed us. (That or kidney/bladder infections.) As I said in the previous post, I have friends in their 50’s and 60’s and 70’s with SB, but they are alive mostly because they were part of the 15% born without hydrocephalus. So…what happened in 1958? That’s when the modern-day shunt was greatly improved upon by a man named John Holter. He was not an engineer. Not a genius. Not a doctor. Just a guy trying to save his son. Ultimately he could not save his boy. But in the attempt, he created the basis for the shunts still in use today. This guy is the reason I’m alive today. He’s the reason that a huge population of people are now in their 30’s and 40’s and 50’s, with SB and hydrocephalus…….well, except for the 64% that are aborted! His creation of the one way valve, along with his idea to make it out of silicone, has saved so many people since 1958 when it was put into wide use. Before John Holter did what he did, 85% of us died in the first year or so life. But this man’s modifications on the shunt have saved possibly hundreds of thousands of lives, including mine.

…..and now the bad news….since his invention in 1958, there has only been one major advancement in shunts. Making them programmable so that if it’s draining too much or too little, they can place a powerful magnet next to your head and change the setting without opening you up to put in a whole different type of shunt that drains less or more. Big advancement. Wasn’t around when I was having all those revisions in the 90’s, but it would’ve saved me some surgeries. But as I found out summer 2013, even if I had a programmable shunt (which I still don’t) there is still nothing out there that will prevent the holes in the catheter from plugging up. If the holes plug up, then CSF doesn’t drain, and you need your shunt replaced. Mine plugged up slowly over 17 years, but then the one they replaced that one with plugged up almost immediately. 6 weeks. So he replaced it again and now this current one was fine at the MRI a month ago, but could start plugging up anytime it wants. So. Shunts save lives. But someone needs to be working on improving the issue of plugged up holes. #justsayin’ Because hydrocephalus isn’t just connected to SB, by the way. In the US alone, newborns and those under age 2 account for 15,000 shunt placements. Children and adults who suffer head trauma account for 24,000 new placements. Other causes of hydrocephalus, such as brain surgery and stroke, or conditions affecting the elderly, total 27,000. Another 38,000 surgeries are to replace failed shunts. . So it’s not just an SB thing.

Please click on this link to read more about John Holter, his son, and the shunt.

And Chiari Awareness Month too!!

And Chiari Awareness Month too!!

26. Yeah there’s aaaaaall the physical. And it’s a lot! The Chiari II, the hydrocephalus, the nerve damage, organ damage, uti’s, bowel and bladder stuff, self-cathing, numbness, pressure sores, headaches, shunt revisions….but all of that is not as important to me as NLD’s. Nonverbal Learning Disabilities. Many people with SB deal with this. And it seems to be caused more so by Chiari II than SB. Something about the cerebellum being forced downward may contribute in large part to NLD. This link talks about actually seeing via MRI changes in the brain structures of those of us who have NLD vs people who do not. I didn’t know I had a learning disability until my first SB National conference, then later actually being diagnosed by a neuropsychologist. I am basically the poster boy for NLD. Not every trait. But a lot. I was 27 years old. A full fledged adult. 27 years old before I realized…I am not stupid. I have a learning disability. I am not stupid. In school, teachers would always tell me how smart I was, they even labeled me “gifted” in elementary. Because I was so verbal. That’s part of NLD. We are great at the verbal. The language. Reading. Writing (as evidenced by this blog post!) Talking. And we sound smart doing it. But it’s the nonverbal part that we suck at, and that gives NLD its name. Because abstract things like math….yikes!! Algebra. Chemistry. Biology. Anything that is more abstract and less verbal, we have deficits. But I didn’t realize that. I just thought I was dumb. Until one session changed everything. Changed my self-esteem, the way I felt about myself, old records in my head that played my whole life. It was amazing. Oh there was still work after that. Still is work, because I still have this learning disability and it comes with a lot. Learning difficulties, awkwardness in certain situations that I have to consciously fight through. I believe I have even lost a friend or two because of some effects NLD’s has on me socially. (Topic for another blog entry perhaps.) Comes with a lot. But at 27, just learning about it changed my life. So….kids…I have posted several things after this. Some sites that talk about NLD’s, but also, I copy/pasted a portion of a story I wrote a year after my first conference. The portion of the story about NLD’s. You’ll see. It made quite an impact on me:

“I attended one seminar in particular that changed my life. The class was on NLD’s (non-verbal learning disabilities). The doctor with SB was presenting it. He began by saying that not everyone with SB has all these issues. And it’s true. Some don’t. Seems to be connected more with Chiari II than actual SB. But most people with SB share many of these traits. He started listing: We aren’t so good at math. We have trouble with too much visual information. We tend to write everything down. We make lots of lists. We are very verbal, great spellers, and great at subjects like English. In fact, oftentimes we are labeled as “Gifted” when we are younger because of our superb verbal skills. Later on though, we are overwhelmed by all the subjects we are not so great at. We have trouble processing too many visual cues at once. He said all these things that everyone in the room was giggling at, because we could all relate. And I giggled too. But also, I felt for the first time in my 27 years of life, less alone. I felt like I belonged. I thought to myself, “It’s not just me. I’m not stupid. I’m not a freak.” And I felt vindicated. Every time I’d feel stupid growing up, for not being able to follow a simple set of verbal instructions, I finally understood why. NLD’s cause us to forget half the list before we even start because of the fact that people with NLD’s tend to think in words and not pictures. But the human mind works just the opposite and can hold more pictures than words, so we end up forgetting half the list. Think about it. If someone tells you to go to the store and pick up bananas and pears, dog food, milk, and bread, you probably pictured all those things. I picture the words. Then forget half of them because again, humans are typically better at retaining pictures and not words. And it FINALLY made sense to me how I could feel so smart and so stupid in high school! How I could have “smart” friends and talk about “smart” things and be in the “smart” classes….and yet, not understand a lot of what was going on in most of those classes! Math, forget it! Sciences, yeah right! And every time as a child that I couldn’t find something I was told to go get in our garage, it wasn’t my fault. I never found the hammer because the moment I walked into the garage, I was overloaded with too much visual information. I never knew where to start looking.
That one class started to change everything. I began to understand more about myself; why I was so good at English, so bad at math. Why I could just talk and talk (as evidenced by this story) and was so bad at finding the car in the middle of a huge parking lot (too much visual stimuli). Why I can’t read maps or blueprints to save my life but I spent my time in elementary ordering 800-page “Mysteries of the Unknown Universe” books from Time-Life instead of reading the latest adventure by Judy Blume. How it was that I felt so smart and so stupid in high school, both at the same time. I finally felt “normal”. I finally felt peaceful. I finally felt like I “belonged” somewhere. I finally felt………Home”

Click here and here and here for more information on NLD’s.

27. So, kids, remember way back in SB Fact #7 I talked about how med students study outdated SB information for like a day, then proceed to scare the crap out of expectant parents, who then have abortions 64% of the time? Well I’m not just making that up. I have it on good authority. I’ve been giving the same spiel for years and years when I talk to people about SB. Give them the basic facts, talk about how its more common than cystic fibrosis, muscular dystrophy, and multiple sclerosis combined, talk about the 166,000 people with SB living in this country. The usual. Well, I was doing that with my cousin. She had asked about my revisions in summer 2013. So we got to talking about SB. And she kept asking more and more questions about SB. How many people are affected. Basic stuff. Stuff I thought she should know because, did I mention she’s a doctor???? Like, a real honest to goodness doctor. And she had basic questions. That’s when I gave her another line that I’m always reciting when talking about SB. I always say “the problem is that med students are taught about SB for like a week in med school, and always given outdated information from the 1950s when most of us did die from urological or neurological problems. So they scare the crap out of parents by using bad info, so 64% of parents choose abortion.” Been saying that for years. Well. My cousin looked right at me and said something that I found terribly depressing. She said, “A week?? A week in med school? Not even a week. A day. One paragraph. You and SB are one paragraph in one day of med school.” She graduated med school only 6 years ago.
I was a combination of sad, angry, frustrated, shocked. It’s no wonder 64% of SB pregnancies are aborted. No one is being truly taught about it. SB is the #1 permanently disabling birth defect in the nation, yet get only one paragraph in one day of med school. And we don’t end up vegetables! We don’t die, in 2014, in the first year. Not anymore. Not by a long shot. Her news made me sad.

28. ….a brief SB related autobiography of me……I was born in the mid 70’s in El Paso, Texas. Spent the first several weeks in the hospital in Mexico because the hospital in Texas wouldn’t operate on me. “He won’t survive anyway,” they callously informed my parents. I was in that Mexican hospital a month or two I think actually. That’s where they (reluctantly) did my back closure. “Reluctantly” because they also told my parents I wouldn’t survive and that if I did I would be a vegetable, like the docs in Texas had done. Still, they did the closure and placed a shunt, expecting I’d be dead soon anyway. That’s when my parents made the difficult decision to uproot their lives and move my older brother and me to Colorado. I was 3 months old. And thank God they made that choice! After the first set of doctors gave my parents the grim diagnosis that I’d be dead in a year or be a vegetable, capable of nothing, it was beautiful for them to come here and be told, yes, the seriousness of my condition, but also be told things like “So we need to get him into PT as soon as he gets a little older so we can give him the best chance at developing his muscles and of walking.” And “We’re going to put him in the hands of an amazing neurosurgeon and replace his shunt because the type he has in place now is a type we were using 15 years ago.” And “We have a nationally renowned urologist here. Let’s go meet him.” Then I had that shunt replaced 3 times before I was 4 years old, a couple other surgeries, a few hundred trips to the ER, more shunt surgeries from the age of 15-20, a few more trips to the ER, a couple other surgeries, some other non-SB related stuff happened (something about a marriage, and a divorce and a second marriage) some other surgeries, then two shunt revisions summer 2013…and now here we are.

So….your turn now. Today I want to create an open dialogue with my friends and family on Facebook who are not directly affected by Spina Bifida. Your opinions, questions, perspectives – what can I do to address, inform, educate? The majority of my posts about Spina Bifida on FB are “liked” and commented on by others who also have Spina Bifida, which is truly appreciated and helpful to have their perspective as well.

But the point of posting awareness statuses is to educate those of you who do not know about it, and I would like to know if
1. Do you read these statuses? and
2. If so, what are you getting out of them? What else would you like to know, either generally or personally about me and living with SB? Feel free to ask here or if you’d like, inbox me any questions, comments, thoughts, opinions.
Thanks. Look forward to hearing from y’all

********WordPress peeps….the reason there are only 27 facts is because the other ones were simply entries from this blog 🙂 I took entries from the Disability Advocacy section of this blog and posted them as facts. Feel free to check out the rest of the stuff in this section, including an entry on how to raise a child who has a disability. And subscribe to my blog. And share my links with others. Make it go viral! 🙂 Thanks for reading. 🙂 And if you actually read all of this, here is your reward and your dose of cute for the day!

born with sb lived to tell(10-7-14 this version  has been edited to include lipomyelomeningocele in #13, as another type of Spina Bifida)

(10-23-14 Updated to include information on The Hand of Hope)

 

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48 Responses to Spina Bifida FAQ’s: Everything You Ever Wanted To Know About SB (updated 10/23/14)

  1. I don’t know if you’re still posting on this blog, but I just came across this post today. Today I also sat through multiple tests and then a meeting with my husband and over 8 specialists to talk about our unborn son who was just diagnosed with SB. Thank you for writing this. We are just outside of Denver and are going to Children’s here and have been given nothing but hope for our little boy. Thank you for being honest and straight forward with how your life is while living with SB. You give me hope as a mother and reading your story helps me prepare for how to help our son the best we can.

    Like

  2. Jeanette R. Banahan says:

    You said that 65% of unborn babies with possible spina bifida are aborted. What is your source for that figure? I’m not saying it is or isn’t accurate. I would just like to know how you obtained that figure. Thank you.

    Like

  3. Trish Ings says:

    A very interedting article. Even as a person with Spina Bifida I learnt a thing or two!

    Like

  4. CorieSue Freeman says:

    Thank you so much for such an informative, easy to understand article. My 4 1/2 year old grandson, Ryan Noyes, was born with SB and has a shunt too. He almost died from meningitis while still in CHOP. Today he is racing with braces and crutches, and is so bright I call him my Doogie Howser. The down side is he’s still in diapers. There was a great article in the Reading Eagle about him and his best friend Gema. You’ll probably get a smile from it. CorieSue Freeman. Coatesville, PA

    Like

  5. lori nichols says:

    My sister is 23 and she has spinabiphida, she unfortunately is paralyzed from the waist down. She has a very happy life despite all she has been through. Three shunt replacements, 7 back surgeries, multiple pressur sores and even a blood clot in her leg because some “genius” pediatrician thought putting her on BirthContol would help her with dealing with puberty….that was such a horrible hospital stay, now her leg swells all the time as if she didnt already have circulation problems. She was born in 1992 in Orlando, fl. Out of the 5 high risk births that night, my sister was the only one to go home. A social worker literally visited every parent and talked them all into giving up their child, all except my parents.

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  6. Jennifer Nichols says:

    My daughter Angel Nevaeh was born on May 30th 2012 with Myelomeningocele with hydrocephalus. She is almost 3 years old and has had a rough but happy life. She’s had 5 surgeries and two of them were for her VP shunt. She’s been in and out of the hospital just this last year for ITP. ITP is when your blood platelets get low and there’s no reason as to why. She finally has overcome that. When I was told at 22 weeks pregnant that they need to consult the doctor first I already knew what was happening, I was going to have another special needs child. I was afraid for only one reason – is my child going to live only as long as my son did? My son was born with anencephaly and lived 80 hours. I was blessed with the time I had with him. They asked during both pregnancies if I wanted to “terminate” my answer was HELL NO! Then I asked will it hurt me or the baby to go full term and their answer was no. My daughter is struggling with moving her legs. But she can do it a little, mostly at the hip. She LOVES her wheelchair since she can get around like her cousins can and she’s always been the happiest child ever. God gave me this special gift to make me a special person. She isn’t disabled in my eyes and no one has ever been disabled to me. We all have things we have to deal with. I just want the best for my Angel. I never even knew either of these birth defects were out there. I don’t have any genetic disorders in my family but I do have a blood clotting disorder where I clot way to much -MTHFR. Which is also where I have to double up on vitamins since my body doesn’t keep much or any nutrition in. Thank you for your story. I’ve learned so much

    Like

  7. Lavonne says:

    You post very interesting posts here. Your website deserves
    much more traffic. It can go viral if you give it initial boost,
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    Like

  8. Michelle Noris says:

    One of my son’s friends, and his basketball coach, have SB. I learned a lot that I would not have asked them. Thank you.

    Like

  9. cuadramarcia28@yahoo.com says:

    My daughter have spina bifida club feet she is 5 years old very smart,happy little girl she was in the wheel chair for 3 years two surgeries was needed n all the sudden she just decide to walk bless to have her, like every mother out there that are told by doctor to have the option of not having I decides to have her never in my mind would give up on her ,I learn so much of this condition n love having my beautiful isabela in my life a gift from God..

    Like

  10. Lisa says:

    While this is a good article, there is a major error although not related to SB. I have MS, and it is NOT a birth defect. I hope you will correct that fact. Thanks!

    Like

  11. Pat says:

    I was born with SB myself, its anything but easy. Ive had 16 surgeries In my short life and none of them have been a walk in the park. Sure there are some perks to it, but for someone like me, spending my entire life in a wheel chair isnt so much fun as it may seem. To be honest, Its quite cool to see a fellow SB patient share their story and be totally open to help everyone and anyone. Props to you my friend.

    Liked by 1 person

    • Props to you for still being here. The world needs you. 🙂

      Like

    • This is going to be a TOO long post but I’m buzzing because it is a splendid end to a great day! It might even inspire my own blog posts…. Found this article amazing because I’m planning a project called “It’s Not Just Me” on living with mild CP, PTSD and all the stuff in life that has made me less than the stereotypical supercrip from not being happeeee all the time and the UK Government to the stuff that gets you called ‘not a real disabled person’ (even by other disabled people) or rejected by either the fully paid up wheelies or the people who come to it later (see Spoon Theory) I’ve plenty to say on disability politics and politics, how they mess up the relationships of those everyone thinks have all the same opinions and life experiences – sad and and heroic, NB: actually we should explain to them it’s like office politics with more wheels and less paychecks!?
      Every post I’ve seen today on any topic has been serendipitously linked in some way to the previous one and towards my surviving rather than succumbing to doom. . Friend’s husband shared this via FB minutes before the Daily Mail (UK) put up an article about how CP (cerebral palsy) is probably genetic in 54% of cases so they’ll soon be able to test for it and…yes…you know THAT …then they’ll be able to get it…sorted. Sort of….stuff. Gee. Thanks! Life unworthy of life and all that, eh? So pleased to meet you my fellow medically identifiable anomalies! …. 🙂 Thanks for the uplift!
      Re the sharing outside SB community? Will do. – Friend’s husband who shared this is worth a mention because, yes we do have husbands. Even those of us who were told to abort our longed-for babies because of our CP and PTSD have husbands though it’s a wonder our menfolk survive being told to abort our babies either when they have to assimilate the sheer prejudice all in one hit in a doctors surgery – he’s still here though whilst we refused to abort, we simply didn’t get lucky.
      We were STILL handed a packet of Folic Acid with the words “For the prevention of Neural tube defects and other abnormalities) in bigger letters than “Folic Acid” even though the doctor didn’t ask us to consider -she DEMANDED I terminate. (Errr… I was already taking it thanks….)
      HUGE props to any one of us with the guts to think outside the box brave enough (lol, I know!) to say it how it REALLY is! I have CP not SB but I’m fascinated by the similarities and differences. Not going to pretend I understood all the numbers stuff – but that’s OK because I skimmed then went….. “NLD??? “YIPPEE they have it too?” (I now even have _word_ for my ‘maths stuff’ it that is neither ‘brain damage’ nor a list that sounds like a medical textbook (spatial awareness issues, no depth perception, prosopagnosia, dyscalculia – phew! 🙂
      Very very informative, funny and erudite and packing more identity politics, academic thought and sheer blooming how we wish people wouldn’t say “OOOh, you’re having a WALK today, well done!!” just because we were daft enough to try to walk round the shops instead of trying to take a quick break before the walk back….That’s not inspiration, that’s forgetfulness!
      Finally: You explained (possibly) why when my allergies were through the roof I couldn’t eat bananas. It’s just enough latex in my early life to provoke a ‘nooo’ from my immune system. Or not… 🙂 A blog I’ll be coming back to often!

      Like

  12. Tony says:

    My name is Tony and I was born in 1969 in Brisbane, Australia. I have neither hydrocephalus nor Chiari malformation. No learning difficulties either. Very blessed. Looking forward to living into the next couple of decades and beyond, God willing. Am happily married since September 2004 with 2 beautiful teenage stepchildren.

    Liked by 1 person

  13. It’s 3:45am…and I’m reading a again for the umpteenth time. Same results as always. I laugh. I tear up. I’m happy to call you friend. I mean, you have not been retweeted by Mick Mars, but you’re still pretty damn awesome to me.

    Like

  14. Rebecca says:

    Thank you so much for this wonderful list full of accurate info, resources, experiences and history! My brother was born in 1975 – during the time period when myelomeningocele (open SB) was considered not to have a quality of life and parents (including mine) were pressured into not even having the lesion closure surgery. Due to this, infection can obviously enter the exposed spinal cord, which happened to my brother and he died at exactly 2 months old. My parents, especially my mother, have always been guilt-stricken by this.
    Fast forward, when my husband & I decided to start a family, I wanted to be sure I did everything I could to make our baby as healthy as possible, so I scheduled a pre-conception health exam. At the appointment, I explained my brother’s SB history and asked what I could do to help prevent SB in my own children; the NP acted like I was crazy and said it’s not genetic at all. I kept pushing for at least a recommendation for higher FA intake and she finally told me the amount recommended for women who have already had a child with SB (yes, let’s wait until after the fact shall we?!). I started taking prenatals as well as the extra FA months before we started trying to conceive. We went on to suffer 2 miscarriages (one a set of twins), but also had 2 completely healthy, full-term, typical babies. Then we were expecting baby #3 (pregnancy #5) and at 18-wks gestation, my husband and I found out our 3rd baby had spina bifida – myelomeningocele (L1-S). The doctor kept repeating in a grim tone that the opening was “very large” and kept pushing abortion. We refused abortion as an option. I was then referred to a high risk OB with an open mind. She told us multiple times that current standard of care is to only recommend the 4,000mcg of FA to women who already have had a child with SB, but due to my brother and my son both having SB, she would immediately personally start looking at the woman’s whole family history and recommend it for women with SB in their family at all. (Thank you!) Our little guy is now 15-months old, smart as a whip, a true charmer, has Chiarri II, hydrocephalus, VP Shunt, bowel and bladder issues, paralyzed from his hips down, incredibly strong upper body, and had his ZipZac wheelchair genuinely mastered by 12-months old which he chases his brother and sister in and gets into trouble just like any other toddler. His lesion is larger than my brother’s was (I’ve seen pictures of him), which tears my parents up inside seeing how un-disabled their beloved grandson is with life and thinking how HIGH quality my brother’s life would have been.
    Thank you in behalf of parents of babies with SB for giving your friend the speech. My husband finished RN school while I was pregnant with our kiddo with SB (he took and passed his RN boards while we were in the hospital for weeks after delivery!) and it’s absolutely true that Spina Bifida was barely touched on and skewed – my husband actually ended up educating his teacher and classmates about it! That 65% is largely the fault of medical education for sure and has to change.

    Liked by 1 person

  15. Jessica says:

    Thank you for writing this! It is so informative and easy to understand! I have a 9 year old boy who was born with spina bifida. I found out when I was 7 months pregnant. I got the same grim story from the doctors, He will never be able to walk, his brain isn’t going to develop, your to young and already have another child to think about (I was 25 and had a 4 year old son). I was heart broken by hearing all this, but didn’t care i wanted to give my son a chance. Like i said he is now 9. He walks with out help has partial control of his bladder and bowels. Loves baseball and basketball. Struggles with math and at least now thanks to your article i understand why and will pass this on to him. I could not imagine my life without him!

    Like

    • They said almost the exact same thing to my mom back in the day. She was 23 when I was born and had a 3 year old son, my older brother, already. I’m so happy you chose to have your boy ❤

      Like

    • My God. The phrase ‘late term abortions’ just took on a whole new meaning. and I was born at 7 months myself.
      God bless you. It takes a lot of courage to be the sort of person who tells a doctor where to go. I know.
      I had to when expecting. Hugs. Thank you from a person with CP who also had to hear ” You MUST have an abortion!”
      Thank you.

      Like

  16. Reblogged this on shirleydonkey and commented:
    This blog on Spina Bifida was written by a good friend of mine. I hope you enjoy. Go to his page and read his other entries too.

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  17. Susan Winters says:

    This is Awesome! My daughter was born in 2001. Myleo L5-S1 hydrocephalus chiari 2 neurogenic bowel n bladder (and more). This is the most comprehensive written sb explination i have seen to date.

    I have said for years (counselling other parents at the childrens hospital, various sites, in general conversations as a parent that has been there) that a non scare tactic explanitory realistic view information packet/book/speech should be provided to parents instead of the insane amount of digging research tears fears us that are thrown worst case scenarios and left to fend for ourselves in trying to make an informed choice. Bless you for being an advocate.

    Liked by 1 person

    • Thank you, I appreciate your kind words. As I told that doctor back up in #16, it would be medically irresponsible to sugar coat the diagnosis and pretend everything is gonna be just great. But scaring the living daylights out of parents with worst case scenarios is, I believe, equally as irresponsible. That contributes to the 64% abortion rate. 😦 I also wish they had a non scare tactic, updated, 2014 version of medical information to give.
      Did you happen to click the last link in the blog? I only ask because it might come in handy someday. 😉 It’s suggestions (and only suggestions 🙂 ) for raising a child with a disability, so that they become self sufficient independent adults (as much as possible with each child’s situation of course.)
      Thanks again for you kind words. 🙂

      Liked by 1 person

  18. Meg says:

    There is another form of Spina Bifida, Lipomeningecele. That is the type I have. There is a fatty tumor usually near the base of the spine where the break is. It’s rare, I believe 1 in 50,000 births.

    Like

    • Shirley White says:

      I am 69 years old and have the lipomyelomeningocele too. I have led a pretty active life until I had an untethering when I was 52. Before surgery I walked unaided. Now I use a cane, walker, or scooter depending on how much walking I need to do.

      Like

  19. Nikki says:

    MY son is using like a shoe insert, its customized and his doctor made a comment that when he is done with his growth spurts , I suppose around 18, that he is a good candidate for a surgery that would make it that he did not need any walking aides or braces at all.

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  20. Paula says:

    64%?? That astounds me. Leaves me speechless! My daughter is now 13 and has Spina Bifida. When we were told that she had Spina Bifida they asked us what we wanted to do. Our response was “Well, I guess we will have to learn a lot about it and quick” I can’t imagine having aborted her…it was never an option to me. My biggest struggle was finding real information…information on how real people and families lived with SB and dealt with things. I found some medical things, but I felt that was mostly worse case scenario. I really wish more people would share their experiences more. I’ve even thought about starting a site about how we’ve gotten through things and tips and tricks that we’ve found helpful.
    Thank you so much for this! I learned things I didn’t know and plan on sharing this.

    Liked by 1 person

  21. Julie says:

    Very well said – my daughter will be 23 in November and we were told she would not live to 18. Shared it on my facebook

    Like

  22. Nicholas John de Klerk says:

    Hi I’m Nicholas, but you can call me Nicky. I am 15 years old and was born with SB. Is it possible that people with SB will be able to walk at any time of their lives without the use of crutches, braces, etc.?

    Liked by 1 person

    • Hi Nicky 🙂
      All I can tell you is about my experience and those of my friends with SB. And some of us do walk. With afo’s (braces), or forearm crutches or walkers. For example I can walk with braces, but I prefer not to, because they really help with balance. But there are also those that walk without any assistance at all! I can think of 4 friends off the top of my head that walk without aid. It’s not that their SB is “mild”. I think that term us inaccurate. I think their SB just affected them differently; affected different nerves than on other people. One who walks unaided has pretty severe kidney issues for example. It’s just different for everyone. As far as going from aids to walking without aids, I think anything is possible, and with technology being what it is, who knows what can happen even 5 years from now! 🙂

      Like

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