Spina Bifida and Quality of Life

Quality of life. 

That's something we, as humans, often feel the need to judge. 

When a baby is diagnosed in-utero, parents are too often told they will grow to have no quality of life.  Some parents are even told their child will be a vegetable.  Then comes the fact that their child *may* use a wheelchair, which of course, they make sound like the end of the world.  Oh, and let's not forget that you are told your marriage will likely end in divorce if you take on raising a child with special needs.  You are given a doom-and-gloom speech, then you are offered your "options".  

It's hard to hear the doctor speak these words.  Most of the time I hear new parents express that they are scared.  I read their posts, I reply to their e-mails, and I get it.  The truth is, when I found out Madi would be born with spina bifida, I was scared too.  If I knew then what I know now, I would have saved myself a lot of stress and tears, but I can't go back and change the past.  What I can do, though, is try to reach those parents feeling scared and reassure them that it will all be ok; that their child will be ok.

When I look at my girls I see light.  I see laughter and love.  I see pure joy.  They aren't faking their happiness, or trying to be something they aren't.  They aren't sad, they don't pitty themselves, and they don't let anything stand in their way.  They are smart, talented, creative, hard-working, funny, silly, loving, and the list goes on and on.  Spina bifida is part of them, but it doesn't define them. 

I started to wonder, though, how adults with spina bifida feel; how my girls will feel.  Do adults with spina bifida feel like they have a good quality of life, or do they feel that those doctors are right? Instead of making assumptions, I decided the best way to find out was to ask.  These are the responses I got.  They are unedited and were not filtered in any way.

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My name is Chris, I'm 47 and was born with Spina Bifida Myelomeningocele, L4-L5. My parents were told that I would not have a very good quality of life, and I proved them wrong every chance I got. I went to mainstreamed Elementary, Middle and High Schools, and graduated from each. I played on a youth soccer team with non-disabled people and our team won the championship. I then got a degree in Computer Science from a local college. And I also managed to break a Guinness World Record along the way. I've worked at a few jobs, I drive, I have a social life, and enjoy doing many different things. I would say that my quality of life is just fine.  

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 Amanda~ I'm not one to let life live me.

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I am Heather, 28 from Rochester MN. I was born with L4-L5 Myelomeningocele Spina Bifida and Hydrocephalus. I walk mostly, with a brace for support of my left ankle. I use a wheelchair, for long distances. I have had around 10 Spina Bifida related surgeries, plus a few extras for other things.

From elementary school, to high school, I was in regular PE and I was even on the swim team, in Middle School. I had Physical therapy, mostly in my childhood. I started adaptive PE in high school. I got my license and drove, just like anyone else did. I had my first job, at Burger King, at 15. Having other various jobs after that, including always babysitting on the side. I had boyfriends, most whom were able bodied. It seemed the disabled boys, were the ones who didn't work out the most! I went to college for Child Development. When I was 19, I found my now husband online, even though I wasn't even looking for a boyfriend at the time! I moved from Minnesota to Illinois, to live with him. From there, I ended up being a nanny and working for a local company, working door at concerts, on the weekends. We were married in 2006. In 2007, our daughter was born. She died at 4 months. We then had a son, in 2009. We moved back to Minnesota in 2012 and since then, I have been a stay at home mom, with photography on the side, for a job.

I guess what I am trying to say is, being disabled, doesn't have to stop you from living a normal life. Just because your body doesn't work like everyone elses, doesn't mean there's not a way to get things done! I think, your mind is the only thing that can hold you back.



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Misty-    My parents were told, like a lot of other brand new SB parents, that I would have no quality of life. They were told I'd never walk, talk, feed myself...I believe the term "vegetable" was used. I find it strange how much I don't actually feel like a potato. My feet don't work. I can't walk long distances. It's never been that big a deal to me. I've never had the use of my feet, and I don't know what I'd do with them if I did. I don't understand why having floppy feet automatically equates to a poor quality of life. If someone needs glasses, we don't have a pity party and cry about how awful it must be to need extra equipment to see, and we certainly don't come to the conclusion that their life must be SO AWFUL that we should "let them go" to end their suffering. I wear leg braces. They help me to have that "quality of life" thing I'm not supposed to have. It's not a big deal. I slap them on when I put my shoes on, the same as you do with your socks. I don't think the 45 seconds it takes to do that really dips into my quality of life. Who decides what "quality of life" is anyway? Quality of life is a choice. I could sit around all day and mope about the fact that I'll never be an NFL running back, or I can praise God for the things I can do! I choose the second one. God has been good to me. I don't have a reason to lay around feeling sorry for myself. I have a good husband, a good family, friends who will wait that extra 45 seconds so I can put my braces on. I get to tell other people what my quality of life will look like. No one gets to decide that for me. I choose to rejoice in what I have.

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Susan- When a person looks at the world, they are doing so through their own unique experience (perhaps one reason those without SB view us as having a poor quality of life.). As such, since I have never known what it is like NOT to have Spina Bifida, I don't have anything to compare it to. Comparisons though, in my opinion, are dangerous. Comparisons validate these stereotypes and pre-conceived notions and can lead to self-fulfilling prophecy if we're not careful. Yes, I have had more medical issues than someone without SB. I've had many surgeries. However, these moments have made me stronger, both physically and emotionally. I have defined my quality of life - not by the difficult times, not by what I don't have, not by what I can't do - but by the blessings I have been given.... blessings of family, friends, a job, talents and the ABILITY to make a REAL contribution and difference for others. These are the aspects of life that bring me joy and purpose. There is so much for us to learn from each other and we all deserve that opportunity to decide for ourselves what our definition is of "quality of life".

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 Kristen-  Kristen did a research paper on spina bifida in highschool.  Though she has spina bifida, she found what she read quite terrifying and saddening.  She now works towards helping others view spina bifida in a more accurate and positive light, and empowers others to live independently.  She has a youtube channel she keeps updated with videos where she shows how she lives and thrives independently.  She hopes it will be a resource for other parents that don't know where to get their kids help and also for other adults with disabilities.   Her youtube channel is....

https://www.youtube.com/user/KristenMarieHart/featured?view_as=public

Kristen says....

 Despite the fact of being a fulltime wheelchair user I have still managed to live on my own, drive and recently graduated from cosmetology school! And that I make those videos to help and encourage others in chairs and their parents so they can teach their children.

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David- David does not have spina bifida, but also experiences judgement on his quality of life as he lives with Duchenne muscular distrophy.  He shares....

Nobody can make that decision for me, but me. I may be fully ventilator dependent, have a trach, depend on a food tube for nutrition, function like a quad and require 24hr supervision, but I absolutely love my life. I'm the smartest person in the family, can tell you how to fix or build almost anything. I've loved & have been loved by the best girl ever (my SB angel) and lost just as much. I'm a very passionate person, I advocate for Duchenne and SB communities where I can.

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Nicole-   Thirty-five years ago, I was born to a young couple who had no idea their baby was less than perfect. It wasn't until after I had come into the world that my parents were informed by doctors that their new baby girl had something called spina bifida. I was immediately rushed to another area hospital that could handle my immediate needs, which required multiple surgeries. Later, doctors informed my parents that because of my disability, I would be facing a short-lived life in which I would be a severely mentally and physically disabled , vegetable,  and would have no real quality of life. Because of this, they said, my parents should just allow them to medically starve me to death. They didn't. 

I've lived my life motivated to prove those doctors (whom I've never met) wrong. Not only did I graduate from high school, but I also received my bachelor's degree. I moved away from home to go to college, determined to figure out how to take care of myself. I learned to drive, with a convertible...because I didn't want the cliched "special van". I've gotten married, held down jobs, and bought a house. Not bad for someone with no quality of life. If only those doctors could see me now...      

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  I’m Lisa, I’m 38 and I live in Auckland, New Zealand.  I have Spina Bifida at Levels L4,L5 and S1. 

I am currently at university full time and have a part time job.  I’m studying a Bachelor of Arts in Psychology and Rehab.  I completed another degree when I finished school majoring in Human Resources.  I’ve been working full time since then.

I live independently and pretty much look after myself.  I am very independent and sometimes struggle to ask for help (even when I should)

I had an amputation below my right knee four years ago.   I originally wounded my foot and due to SB complications I ended up with a bone infection.  I eventually asked my ortho to amputate which was a great decision for me.  I am walking again and have to use a splint on my left leg.  I hate the splint, but I have to wear it if I want to walk.  I use a wheelchair for long distance as I get tired.  I don’t use any other mobility aids to walk.  I learnt to drive at 17 and absolutely loved it.  It gave me more independence.  I had to relearn to drive with hand controls after my amputation.  Took me a while to train my brain that the foot was no longer there to brake…haha!

I struggle more with the incontinence/bowel side of SB.  I have been trying for 2 years to get some help in this area.  I get very embarrassed when I have an ‘accident’.  This puts me off having a relationship as I feel insecure. 

I have amazing friends (both able bodied and disabled).  I am very lucky with the good friends I have.  

My family struggled with my amputation and I haven’t seen them since I had it done.  I think my mother in particular carries a lot of guilt which is unnecessary.  I don’t blame anyone.  It was just bad luck.

I love going to movies, concerts, trips away, dinners out, wine and cheese (lol)

For the most part, my life is pretty normal.  Yes I have some things I struggle with, we all do.  But I’m ok with it most of the time....  I’m just trying to be honest.  It’s not all bad, it’s not all great either.  Just like everybody’s life I guess

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Monica- It both saddens and angers me that parents are told the same thing mine were 49 years ago. I am an RN, a mom with two great kids, a grandma, a wife with a great hubby. My life is not perfect- but whose is? I am just like everyone else, playing the hand I was dealt the best I can. Just because you have medical challenges does not mean you have no quality.

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 Mary-  I feel incredibly blessed that my parents were so motivated from the beginning to ensure that I had every opportunity to reach my full potential, while maintaining as "normal" a childhood as possible. I am especially thankful that they found a medical team with the same philosophy of care. There was very little "sugar-coating" of information-I don't like surprises. I wanted to know what the adults were talking about. I wanted to learn all the "big words." I felt more involved in MY care because I was more informed. I became more involved>doctors talked more and more to me vs. my parents>I started feeling more confident, independent>improved quality of life. Spina Bifida is just one piece of me. I have a masters degree, work full time, own a condo, pay taxes and healthcare premiums(ok those 2 aren't so great); I am a sister, a niece, a daughter, a granddaughter, an aunt, a cousin, a neighbor, a friend. And guess what, no doctor could have predicted any of those, either! Quality of life is something unique to each individual~it's not found in a book. It is not a diagnosis~

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Sarah- I am 27, from Australia born with myelomeningocele. I also have a brother and sister born with myelomeningocele. A lot of people assume life with spina bifida is really tough and I suffer. While there certainly are hard times, I love my life and wouldn’t change it for the world. I do some things differently but it doesn’t mean I can’t do them at all. I study full time, have an amazing boyfriend, am learning to drive and one day hope to work in the disability field, advocating for those with physical disabilities. And hey, I’ve even skydived! I believe attitude plays a huge role in determining the quality of our lives and I chose to live happy.

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My name is Jane. I'm 21 and I have myelomeningocele spina bifida, L4-L5. My parents were told that I would never walk, talk, attend mainstream school, and one doctor went so far as to say I would be "a vegetable by age 5." None of these predictions came true! I can walk using crutches for short distances, but I do use a wheelchair or a scooter for long distances. Even if I couldn't walk, it wouldn't be the end of the world. My wheelchair and my scooter actually give me more independence! I can run errands, carry things on my own, play wheelchair basketball, and even dance. Doctors were also wrong about my ability to talk. Not only do I talk, but I have written and presented speeches for large audiences. I have participated in a speech competition. I'm a bit rusty now, but I used to be able to speak French pretty well. I love to write, and even have a blog about social justice issues. I can sing, too! In high school, I took voice lessons, piano lessons, and I was the lead singer of a jazz band. I was one of only 25 students to be chosen for the Honors concert, and was also chosen to appear in an ad for the school. I sing in the liturgical chorus at my college's Sunday morning Mass every week. Not only have I always attended mainstream schools, I have been in honors or accelerated programs since 5th grade! I graduated sixth in my class in high school, and I have made the Dean's list (which requires a GPA of 3.5 or higher) most of my semesters in college. I suppose doctors were just trying to prepare my parents for the worst case scenario. Life with spina bifida can definitely be a challenge. I have had health problems, some issues with chronic pain, depression, and anxiety, and I was bullied when I was younger, but I am blessed. I have a wonderful family and group of friends who support me during the hard times and celebrate with me during the good times. Of course I have days where I wish my circumstances were different and wonder what life would be like without spina bifida, but most of the time, I love my life exactly the way it is and wouldn't change a thing!



Who Cares?

Sometimes I think back to all the things the doctors said about Madi and what our lives would be like.  They made it sound like such an awful thing that she might never walk.  They made cathing seem like the end of the world.  They said she might have a learning disability.  And you know what I say?  WHO CARES!  I get to love on this vibrant, life-loving, adorable little girl every day.  Nothing else matters.

Sometimes Doctors Are Wrong

Placing one foot in front of the other, I've climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard, for this warrior to overcome. I'm just a man on a mission, to prove my disability hasn't won.

-- Robert M. Hensel

When you first find out your precious baby has spina bifida, your world is thrown upside down.  You search for answers, only to find that there really are no good answers, because all kids are so very different.  Looking back, most of us feel like we wish we had known then what we know now, because we would not have worried or shed tears.  We would have known everything would be ok.  The advice of well-intenioned doctors just seems to make it all worse.  Instead of hearing about all the things our children WILL do, we get the laundry list of what they won't.  And the funny thing is, most of the time, they do!  Our children shine!  Don't get me wrong, we love our doctors.  We covet their wisdom and advice, and we put our children's care, and lives, in their hands, but that does not mean that they are always right.  It does not mean that they can predict what our children will be like.  Unfortunately, some lives are ended early because of the picture that is painted of what their life "will" be. 

Here are some stories of how our children (and adults living with spina bifida) are redifining spina bifida every day.  Stories of children and adults showing the doctors who said they wouldn't, and the world who said they couldn't, all that they CAN do. 

I choose not to place "DIS", in my ability.

-- Robert M. Hensel

Our doctors said Alyssa wouldn't have bowel or bladder function. But my barely 2-year-old is currently potty training at the same level if not earlier than her "normal" friends. It's not TYPICAL for a child with Spina Bifida to have that function, but in her case, those particular nerves must have somehow been spared from damage.
Any time I hear "she can't" or "she won't", I remember the ending of the story, "Why a Bee?": The bee was the biggest problem of all, so the teacher sent her to see Doctor Owl for testing. Doctor Owl said the bee's wings were too small for flying and they were in the wrong place. The bee never saw Doctor Owl's report, so she just went ahead and flew anyway.

No doctor can tell you exactly what your child will be able to do, whether your child is born with a disability or not. Medical journals can spit out statistics, but they can't factor in a child's level of determination. Doctor Owl may be well educated, and he may have a lot of fancy initials behind his name, but he doesn't know my stubborn little bee.

The doctors said that I could never do gymnastics but here I am with my
medal!

Mikayla

When we received the spina bifida diagnosis, our world stopped. The first few things we heard out of the doctor's mouth was "Your son has spina bifida, he will have no quality of life. When would you like to abort." That statement still mortifies me!

Our son Tanner not only has an awesome quality of life, but he is happy living it! This kid never ceases to amaze us as his parents. When there is a will, there is a way. And Tanner always finds that way. :)

After Tanner was born we were told things like.... He won't ever crawl, stand, or take steps.... let alone walk. Tanner has been crawling for over a year now, is standing with assistance, and cruising along the furniture! He is also learning to use a mini walker.

Tanner is the light in our lives, and we would not change him for anything!



After we got the diagnosis I was sitting in my OBGYN's office waiting to be seen and she came in and asked me how I was. I told her "fine". And she looked at me and said, "No you're not. I read your chart and know the diagnosis you received." I told her that yes I am scared to death but we will make it. She said, "You may be fine now but just wait until she's born. Your life is going to be really hard then."

Really? When I look at this face I don't see "hard life". I see one of the most beautiful gifts a mother could ever receive. She is a blessing to this world. Not a burden. EVER!

The doctors told us our baby's life "wasn't viable" and that we should deliver early and let him die (i.e. terminate).Bryce is now 20 years old, plays a mean swing beat on the drums, has a superb jazz CD collection (of which he has memorized all the liner notes--need to know when a song was written? recorded? by whom? Just ask Bryce!), emails and Facebooks his friends constantly (also having memorized all their birthdays, all 284 of them), and is an artist at a studio for outside artists, selling his paintings for over $100 each. I'd say he's not just "viable" but thriving, blessing and enriching all who know him.



The doctors told us our nightmare was coming true.
But instead...we got the little boy of our dreams.

The doctors said he would be "incompatible with life."
But the truth is, our lives are incomprehensible without him.

My doctor told me that Nickolas would negatively impact my daughter's life and would be a burden on our family.
HA! I don't think so!

My parents were told I wouldn't live overnight, and the humane thing to do was to let me go. I'll be 28 in August. I think I'm a little past my expiration date!

The doctors told my parents I wouldn't go to mainstream school. I now have a degree and nearly have a diploma too.

At 19 weeks pregnant we found out we were expecting our second little boy- mister Logan Blake- but we weren't expecting to be told that they detected an open neural tube defect... Nearly weeks later and at almost 21 weeks- we received the official diagnosis of Logan's Spina Bifida and the detection of Hydrocephalus on his brain. God had to have blessed us with a good doctor that day because instead of being pushy and telling what our child would not do- instead he told us the possibilities of what our child might not be able to do and after we decided against termination he immediately sat us down and informed us of what would happen when he was born and if he would need a shunt...


Today- our Logan is 2 years, 8 months and thriving!! His smile is captivating, he has the best sense of humor, he is rolling all over the place, commando crawling, babbling up a storm, pushing up on his hands & knees, he spoon feeds himself & will sit up on his own for a few minutes... These are things that we didn't think he would ever be able to do or questioned when he would do and he continues to amaze us daily at whatever new thing he learns & we thank God for our miracle....



Doctors told me my baby would never walk, talk or "be normal" when he was diagnosied with Spina Bifida when I was 17 weeks pregant. Well they were WRONG... really, really WRONG! It might have taken over 3 years, but he talks non stop now and there is no mute button on him! It might have taken 4 1/2 years, but he walks just fine thank you very much. And who wants to be "normal" anyways? But I wonder what those same doctors would say to see that same little boy SURFING 10 years latter?? The little baby who I was told would never walk not only walks, but is a happy surfer dude who be 11 in the blink of an eye!

My parents were told (back in the day) I would basically "be a vegetable, mentally and physically." I'm a college grad, teach adjunct at a university, run my own business, and am married with three kids.

They said I'd never walk, but I can climb a ladder
Jaici 4 1/2 yrs old

As a 9th grader I was doing terribly in English in school. After a "D" for the 2nd grading period, my parents went to see the teacher to see what could be done to improve. Because of my CP, I am unable to manually write and was trained early to use an electric typewriter (I know, so old school). During the course of their meeting (my parents and said English teacher), my mother expressed the concern that unless my English grades improved I wouldn't be able to get into college. The English teacher was aghast, "College ! I gave him paper and pencil and he can't even write!" College indeed ! I have a BS and MS in Math and a PhDin Chemistry (although I'm not a chemist).

- Mike
(note- Mike lives with Cerebral Palsy, not Spina Bifida, but has an amazing story that needs to be shared!  This picture is of him graduating with his PhD when he was 53!  What an inspiration!)

The doctors told me that i would be paralyzed from the waist down...I am now doing zumba and love it.
- Isabel

Here is a pic of Caitlin crawlingup the stairs.  They said she would never crawl up the stairs.  She has just reached the top in this picture.

At our first Ultrasound, we were told Emmett had Spina Bifida, Hydro, and clubbed foot. The forecast was stormy, and the more we read, the more we listened the worse it sounded. We were asked on that day if we wanted to keep the Baby. Both of us had no doubts. A year after his birth we were told to just put him in a caster seat, get him used to using the wheels, because he would never walk. A year later, our boy started to pull himself to stand, then a year after that, he started walking along with the assistance of a small plastic chair. The Physio told us he didn't have enough strength to hold himself up, she said he would need to wobble forward using the walker and a stander. 6 months later, he showed all of them (8 Doctors were taking pictures on their camera phones), everything halted while he walked down the hall and back again using just a walker. Now here we are 4 years after their grim outlook, Emmett is using KAFO's, and a walker. He is so proud and tall. He keeps going further daily.....Our boy is a tenacious angel, and we couldn't be prouder!! :)

The Doctors said Jazmine will never move her legs, that she will have mental retardation,that she will for sure need a shunt for hydrocephalus and catheters to help her urinate.

Now Jazmine is 21 months super smart, walks on her walker and stands up holding up to anything she finds on her way, no shunt and no catheters and we see all her doctors only once a year for follow ups( neuro, ortho and urologist)

After receiving our diagnosis, we went through the MOMS eval, hoping to learn more about Spina Bifida as well as the fetal surgery. The neurosurgeon (whom we still go to and love) said, "Based on his L2 lesion, even with the fetal surgery he WILL need a shunt, and he WILL use a wheelchair by the time he's in high school." At the time it was the end of the world and I didn't stop crying the rest of the day. (By the way, he is turning 5 on Friday and does not have a shunt.) The next day I spoke with an ethicist, and I told him that I had talked with a SB nurse who told me that she has a few patients who RUN into clinic. He stopped me and said, "She should not have told you that. That is not true. Your son will never run."


Really?




  And a few others....


When I was in 6th grade my Orthopedist told me that I couldn't run, ( I was on the school basketball team at the time!).

-Liza

The doctors told my mom that I wouldn't live past the age of ten. I'm turning 26 in less than a month and I know have a college degree and a job. He also told my mother that my legs wouldn't grow. I was mostly legs till I hit my major growth spurt in my teens.  

You all hear a lot about my little Madi.  The doctors said she would never walk.  And she probably never will.... because I can't get her to slow down and stop jumping in her walker long enough to actually "walk", ha!! 

We, the one's who are challenged, need to be heard. To be seen not as a disability, but as a person who has, and will continue to bloom. To be seen not only as a handicap, but as a well intact human being.



-- Robert M. Hensel

If you want to share your child's story, I will happily add it :).  Just e-mail me your story and a photo or video at jamie_lugo@hotmail.com