21. And speaking of fetal surgery…..The Hand of Hope never happened!! I’m sure you’ve all come across this picture:
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.
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.
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”
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!
(10-23-14 Updated to include information on The Hand of Hope)