7. ………..”He’ll be dead in a year.” ……”If he does survive, he’ll be a vegetable.” ……”He’ll never learn to walk.” The term “failure to thrive” was thrown around. Among other things, that’s what the doctors told my parents when I was born in the mid 70’s. And now, in 2014, with the ability to know beforehand about SB thanks to ultrasound, they say the same thing! “He’ll be a vegetable. He will never do anything. He will have no quality of life.” These doctors study SB for like a day in medical school (no really, more on that in #26), using outdated books and information from 1958 when 85% of us did die too soon, and they think they have the justification to tell parents to abort their kids. Me. They need to abort me. Today’s SB Fact, and the reasons there aren’t more of us, is this: According to a study done by Wayne State University, after the ultrasound, 64% of SB diagnosed pregnancies are terminated. 64%?! That just plain sucks. Because my life, with everything I’ve been through, is still worth living. Through 20 surgeries, including 2 shunt revisions in summer 2013 after not having had any shunt issues for 17 years, and after countless trips to the ER, complications from various procedures, a mostly good first marriage, a mostly bad divorce, the loss of friends, family, loved ones, friendship loyalty and betrayal…..hell now that I think about it, the worst parts of life have had nothing to do with SB at all! The divorce and everything surrounding it was much worse than any surgery or trauma from SB. Knowing someone for 18.5 years, divorcing after an almost 12 year marriage with 2 years of weekly marriage counseling. That’s pain. Worse than any surgeon’s scalpel.
But there has also been lots of beauty in my life. Again, a mostly good first marriage, lots of love, amazing friends, wonderful family, laughter, joy, happy memories, the opportunity to screw up in life, the opportunity to fix it. Second chances. Third chances. The opportunity to educate people about SB, the chance to learn from others who know more than I do. Making lifelong friends in the SB community. And finding an amazing woman who just “fits” better in my Life Puzzle and marrying her in the second go-round of life. My life has been like your life. Yes you, the one without SB. Its been just like yours. With really good stuff and really bad stuff. I’m just living my life, just like you. I’m just doing the best with what God gave me. Just like you. So today’s SB fact for the day: 64% of all SB affected pregnancies are terminated. ……..Thank you to all the moms out there who chose to keep their beautiful kids. Thank you to my mom (and dad) for never giving up on me. …….Thank God for my life.
SB is not a death sentence. Don’t freak out when you hear it. I’m all about a woman’s right to choose, but….I hope you have your baby. You’ll thank God you did. I thank God my mom did.
For a look at lots of adults and kids with Spina Bifida -students, mom, dads, lawyers, doctors, consultants, volunteers- please click here. (NOTE: You have to be signed into Facebook to see that link for some reason.) And of course, a special shout-out to “Wheelz“. This young man is amazing! Certainly not waiting to die, not feeling sorry for himself. In fact, his athletic abilities has led him to be part of Nitro Circus. Click this link for a short clip of him and what he does. This is part of a recent “X-Games Adaptive Action” special that was on TV. Watch him. Listen to him. And then tell me that people are “confined” to a wheelchair. Think about this next time you hear or read some reporter saying someone is “confined” to a wheelchair, or is “wheelchair bound”. Wheelchairs don’t confine you, they free you so you don’t have to stay home, trapped inside all day.
8. In the same vein of people doing extraordinary things with their lives, I am not your inspiration. Please watch that clip. It’s only 10 minutes long and it’s important. But also funny so you will laugh and learn things. 🙂 That same woman, Stella Young, wrote this next thing as well because inspiration porn is bad. Until we do something that you would find inspiring in “typical” folks, we are not inspiring. Until we graduate college, get that promotion, or read to chlamydia infected African orphans every day, we are not inspiring for just going outside and buying cat food. Don’t do it, don’t call us inspirational when you see us on the train on our way to school, don’t think of us as heroes when we show up to work every day. We’re not “bitter crips”, angry at the world when we seem to not respond with a smile and a gracious “thank you” to your pity, or when you tell us you will “pray for us” that we might walk one day. We are not here solely to sit quietly and be inspiring and not have opinions. We’re not bitter, we just don’t think it’s inspiring to get up every morning and get dressed and go outside. So please. Just don’t. I heard of someone, an able bodied person, who read that article by Stella Young and afterwards was furious! Just so upset! “I don’t understand why people have to stay in bed and feel sorry for themselves instead of get up and be an inspiration to someone!” Think about that for a moment. This person was basically dividing people with disabilities into two categories. You can either “get up every morning and inspire someone” or you can “stay in bed feeling sorry for yourself”. That’s it, those are the two options this person pigeon-holed us into. Be some sort of inspirational super hero, or be a loser nobody. But I submit a third option. Secret option #3…..get up out of bed and…..live. Go to work. Go to school. Volunteer. Live your life. Just like everyone else. No inspiration. No pity party either. Just human. Just live. Yeah. That’s a nice option, let’s stick with that one. 🙂
(EDITOR’S NOTE: I’m very passionate about this issue as you can tell. And I’m beginning to think “inspiration porn and the damage it does to the disability community” should be a whole separate blog entry. Stay tuned.)
9. Many of us are allergic to natural rubber latex. This happens because of constant exposure; all the surgeries and medical procedures we go through in our lives and the equipment that doctors use. Gloves mainly. But also instruments, tubing, etc. These all contains latex, so we can develop allergies to it, mainly due to the powder that comes off latex and stays in the air. These days lots of hospitals and clinics are latex free because not only are patients allergic, but doctors and nurses and other hospital staff have developed allergies too! But it can still be an issue if you have lots of procedures and don’t mention latex precautions. I myself didn’t develop allergies until I had a lot of shunt revisions in the ’90s. During the third or fourth revision, a nurse touched me with a latex glove and I developed welts. Been allergic ever since. Still, I’m not as allergic as some of my friends. They can’t even be in a room where latex balloons were blown up *the day before*, because the latex powder still in the air will make them go into anaphylactic shock. I’m not quite that extreme, although latex balloons and tire stores and bananas and kiwis are a serious problem and I do avoid them. Bananas and kiwis share a similar protein to latex, which comes from the natural rubber tree, and are therefore chemically similar to latex.
So, boys and girls, if you ever wanna kill Bleeding Ink and make it look like an accident, simply put on latex gloves, cut up kiwi and bananas, grab them with gloved hand, put them on a platter, tie some latex balloons to it, and serve it to me in a tire store. I should be dead in minutes. 😉 oh and sprinkle cinnamon on it for good measure. (Slightly allergic. Non SB related.)
10. In 95% of cases of an SB diagnosis, there is no family history. Which is why it’s so important for any woman of child-bearing age to take 400 micrograms of folic acid, which can be found in most multivitamins, every day for at least 3 months before getting pregnant and 3 months after. SB happens in the first 30 days of pregnancy. Most women don’t even know they are pregnant at that point, which is why it’s so important to take it if you’re even thinking of getting pregnant. Folic acid has been shown to reduce the incidence of SB by as much as 70%. But if you are a woman with SB yourself, or have siblings with SB, or already had a child with SB, you need to up that to a prescription of 4 mg (4,000 micrograms) of folic acid every day. IMPORTANT NOTE: There are plenty of moms out there who faithfully took folic acid every day for months before getting pregnant and still had a baby born with SB. This shows that there are other as yet unknown causes for SB, likely genetic or environmental in nature. Folic acid merely helps. It is not a cure.
Factors that are known to increase risk of Spina Bifida include:
*Previous pregnancy affected by Spina Bifida
*First, second, or third generation relative living with Spina Bifida
*Taking valproic acid or carbamazepine (anti-seizure medications)
*Having diabetes before the beginning of pregnancy (not gestational diabetes)
*Inadequate folic acid intake
*Low vitamin B-12 levels in the body
*Exposure to Agent Orange during the Vietnam War
*Having high temperatures early in pregnancy (which may include fever, or exposure to the heat of hot tubs, saunas, and tanning beds)
11. Whether ambulatory or in wheelchairs, people with SB have decreased sensation and poor circulation in parts of their body. Specifically their lower halves. Therefore, much like diabetics, we need to look at our feet and legs every day, looking for redness, bites, pressure sores, cuts. At best it can be something you find and take care of for a week or so until it gets better. At worst, it can turn into a major infection with years of antibiotics, surgeries, amputations, MRSA infections, organs shutting down and ultimately death. So take care of your feet SB peeps!
12. Taking the day off from SB fact of the day, to spend time with my wife at the Pumpkin Festival. Because people with SB can also have wives. Just like typical folks. Hey look at me, I made an SB fact anyway! We can be just like you and get married. And and and!!!……in fact, some of us can be so much “just like everyone else” that we can get married, get divorced, and then go on to a second marriage!! Just like the “Normals”. Have a nice Saturday kids. 😉
13. There are 5 types of Spina Bifida. Three common kinds, one that is less common, and one that only has one documented case where the child survived. The one that is less common is called lipomyelomeningocele while the one that has only one documented case of survival is called Rachischisis.
Lipomyelomeningocele consists not only of spinal nerves inside of the sac but also has fatty tissue entangled in the nerves. It’s also typically covered in skin. Although it is less common, people with this type also typically do as well as people with more common forms of SB. The other kind is usually always fatal, and only has one documented case where the child survived (and is still alive. 🙂 ) I have the most common and most severe form that is compatible with life (except for Eli! 🙂 )
The three main types are:
1. Spina Bifida Occulta: This is the least severe form of Spina Bifida. It is usually detected in later childhood or even adulthood. With this form, the vertebrae may have a slight opening in it, almost just a slit, and the spinal cord is usually normal and does not protrude out from the vertebrae. However, you can have problems as an adult because of this form. Leg, lower back, sometimes bowel and bladder issues can develop
2. Meningocele: With this type of Spina Bifida, the vertebrae are more open, allowing for a sac of cerebrospinal (CSF) fluid to form outside the back. However this sac does not contain spinal cord or nerve tissue. There is usually minimal to no nerve damage involved.
3. In the third type of SB, called myelomeningocele, the opening in the spine, which can be anywhere along the spinal column, is bigger and the sac on the baby’s back does contain actual spinal cord and nerves. The fact that it contains nerves is what makes it damaging. Depending on where along your back that opening is, those nerves and the ones below can be affected. Mine is at L4-L5. 80% of people with SB have the myelomeningocele form.
In the fourth type, the one with one documented case of survival, there is a cleft (opening) through the entire spine. One of my FB friends is the proud mom of an adorable soon to be 4-year-old boy with Rachischisis named Eli who only has 3 vertebrae that are closed c1-c3. He is a true miracle. The fact he is alive and doing as well as he is, is nothing short of amazing.
Here’s his page on Facebook
14. Below is a picture showing the different areas of the spine and which nerves can be affected when you have SB. My spinal opening occurred at L4-L5. Most people born with SB have lesions somewhere along the lumbar level….then again that really doesn’t mean much. SB is what is known as a “snowflake” condition, meaning no two cases are the same. Everyone with SB is different and the level of nerve damage is almost irrelevant to where the opening was. In other words, lesion level does not = function level. For example I know people with lesions below mine with more nerve damage in their legs than I have, and I also have friends with lesions above mine, where in theory more nerves should be affected but they’re doing better than me! One thing many of us do share are some level of bowel and bladder issues, ranging from full control but a small bladder, forcing us to pee pretty often, to bladder spasms, to no control. Fortunately in 2014, there are surgical and pharmaceutical options to help those issues.
So the picture below is mostly FYI, because it is pretty much never set in stone when it comes to the correlation between where your spinal opening is and what nerve damage occurred. This is different for example from an accident later in life where you sever your spinal cord. That is usually a clean break. Definitive. This is more like some nerves are messed up in certain places, but not all nerves in those places. Spotty.
15. A small province in northern China has the highest rate of SB in the world. Followed by Ireland, then Guatemala. And among ethnic groups, Hispanics have a higher rate than other ethnic groups. Cause is unknown but it may be due in part to an inability of Hispanic women to absorb as much folic acid as non Hispanics. But again let me stress that there are also genetic and environmental causes of SB.
16. I realize I skipped yesterday’s SB fact of the day. Sorry. But today’s fact is just a story that happened. I went to the doctor today for something. Third year Med student walked in before I got to see the attending. Yep, I was annoyed. I understand people have to learn. But not on me. SB is so complex and complicated, the body systems it affects….as I mentioned earlier that at national conferences, specialists are constantly telling us SB is the most complex birth defect you could have that is still compatible with life. The body systems it affects….neurological, urological, muscular, central nervous system….just, everything. Anyway, so I was annoyed. And sure enough he was shocked….shocked I tell you!!….that he was witnessing a 35+ year old with SB! And ambulatory! And of average intelligence even! So I schooled him. I was respectful. I was patient. I was nice. But I schooled him. “When you get to be on your own and you hear about a pregnancy with SB, don’t go all ‘worst case scenario, scare the crap out of parents, pushing abortion’ on them. I understand it’s your job to inform, to give possible outcomes, to prepare them. To be realistic. It would be medically irresponsible not to be. But don’t go right to abortion; to ‘no quality of life’. To ‘he will be a vegetable’. A whole population of fantastic adults don’t deserve that. Happy, successful adults. Patent lawyers and doctors, teachers and moms and students and husband’s and counselors and stay at home dads and volunteers. We are a lot and we do a lot and we don’t deserve to be dismissed outright from one ultrasound.” There was more but that’s the general idea. He was genuinely appreciative. Grateful even. Said I taught him something valuable today. Go me.
17. Symptomatic Tethered Cord……Another complication that can arise from being born with SB. I say “symptomatic” because technically, everyone who is born with SB has a tethered cord. They just may not exhibit symptoms until later in life, if at all. When we’re born with that sac on our backs filled with fluid and spinal nerves, it must be repaired. Not cured, the damage to our nerves is done. Just repaired. So the nerves are put back inside you as best they can be. But this also causes bleeding, as they cut into tissue when they try to put it all back. Which then causes scarring. That’s the problem. The spinal cord is supposed to be able to move up and down freely within the spinal column, but the scarring limits the movement and causes some nerves to become stuck, or “tethered” to the inside of the spinal column. But it may not be a problem for a while. Some of us first exhibit symptoms of tethered cord during puberty, when we’re growing. Our spinal cord can get stuck by the scarring that was created during the initial repair. If we experience no symptoms from that growth spurt, then great. But if we do, then doctors have to do what’s called “tethered cord release” or “untethering”. They go in and cut all the scar tissue, helping release the spinal cord. “But won’t that cause more scarring?” Yes, it can. Because you’re causing bleeding again, which is causing scarring, which means you might need another untethering someday. And that might be a problem because untethering carries with it risk. You could lose motor function or other nerve function. And puberty isn’t the only time you could develop symptoms of tethered cord. After 30 or 40 years of doing something as simple as bending over to tie your shoe, you could cause just enough micro tears in the scarring to cause even more scarring and become symptomatic. I know people who needed untethering in puberty and I know people who only needed it when they were in their 50’s. I also know some people who had it done and went on with life, but I also know several who had it done and got worse afterwards, even losing the ability to walk. Every case is different.
18. Every person with SB needs to have a general doctor for non-SB related issues that come up. But we should also have a neurosurgeon and a urologist. At least. Those are pretty much the two most important docs ever, for someone with SB. Because shunt issues and urological issues are two things that can get very bad very quickly if not taken care of (as I found out last summer when I had the two shunt revisions!!) And as a bonus, you can get yourself a podiatrist to check your feetsies for things you may have missed during your daily checks (because of decreased sensation in our feet and legs) and a physiatrist also. (<–nerve, muscle, and bone experts who treat the way you move and can work with you in PT or for braces adjustments, etc). But at the very least, have a PCP, a neurosurgeon and a urologist.
19. Many people with SB also deal with depression and anxiety. The reasons could be strictly genetic, or could be situational, given what we deal with every day, or could be a combination of factors. I myself have been diagnosed on more than one occasion by more than one specialist, with GAD, with clinical depression accompanied by occasional bouts of major depressive episodes. This is sometimes referred to as “double depression”. And also diagnosed in late 2011 with PTSD. Yes like the soldiers that come home from war. But it’s not just soldiers who suffer PTSD.
Having admitted to this, I’d like to point out that as much as depression is horrible, we ain’t that special 😉 With 40 million people suffering from some sort of anxiety disorder in this country and over 350 million people in the world suffering with depression, people with SB who have mental illness are in crowded company. And that’s why therapy is a thing. 🙂 And/or antidepressants. And/or natural alternatives. If you or anyone you know needs help, please click here.
20. Fetal (in utero) surgery…what it does, what it doesn’t do. Essentially, that is where surgeons will go in while the mother is still pregnant, usually between 5-6 month pregnant, and close the opening in the baby’s spinal column, put nerves back in, and repair the baby’s back. Here’s what it’s NOT. A cure. It doesn’t “cure” Spina Bifida. The nerves have been outside the back for months, soaking in amniotic fluid which is likely the cause of much of the damage, and so whatever damage has occurred, is done. Not reversible. But here’s what it does…two things mainly. It prevents further damage to nerves, so say someone may have been born paralyzed from the waist down. Fetal surgery may make it so that you walk with braces or forearm crutches instead or maybe even unaided, depending on where the opening was in the first place. But the big thing, at least in my opinion, that it does is that it has been found to lower the chances that you will also have the secondary conditions of Chiari II and hydrocephalus. And thus, not need a shunt. The way it does that is that when the baby’s back is open for so long in utero, filled with CSF and spinal nerves, the CSF is pushing its way down from the brain into the back and into that sac. It’s this pressure from the CSF that pushes part of the cerebellum down with it into the spinal column, causing Chiari II. And that in turn blocks CSF from flowing properly throughout the brain, causing hydrocephalus. Consequently, the baby needs a shunt. When they do fetal surgery, they close the back, and have found that since CSF is flowing normally and not into a sac outside the body but rather all through the brain and spine like it should, its been found that the cerebellum doesn’t push down, and so Chiari II and hydrocephalus are prevented. Again, not a cure. Nerve damage still happens in your legs, likely bowel and bladder, and other areas, depending on how low the initial lesion is to begin with. It’s just less damage. But the lack of Chiari II and hydrocephalus is pretty big in my opinion. …….wish that was around in the 70’s when I was born!
But fetal surgery still carries risk. To the mother. To the fetus. Premature labor is a big risk, as well as other risks. Up to each family to decide if the risks outweigh benefits.