The History of Spina Bifida

Every life is a story.  All of these stories are connected to the ones before. Some of the ones before us had faith to try a new route, a new way. They choose to believe that new ways were possible. They were not afraid to try and reinvent the wheel. They were able to suspend their disbelief and make a difference for those that followed. History is important. It teaches us to strive for forward progress. I once had a physician ask, “Why are you trying to reinvent the wheel?” My response, one of those pregnant pauses. My mind later replied, “Because those that question and push, can make a change?”

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The history of Spina Bifida is rich with those who were trying to improve the lives of others. Some were striving for personal progress as their child’s life and future were on the line. Others were just brilliant and were out of the box thinkers. Their ideas and efforts make the lives of kids like Mel,  full of possibilities.

The history of Spina Bifida  traces back almost 12,000 years. Sometime between 1618 and 1652 Professor Nicholas Tulp of Amsterdam was studying this grouping of symptoms. He gave us the term spina bifida. Almost 100 years later in 1761, Giovanni Battista Morgagni an Italian, linked lower-limb deformity and hydrocephalus. Hydrocephalus and infections were the route cause of deaths for those born with Spina Bifida. In the 1950s, needles were being inserted into the soft spots of the skull to drain excessive fluid. Neurosurgeons were working on the development of a shunt but were having limited success.

In 1955, Casey was born.  He was the son of John W. Holter, a toolmaker from Connecticut. Casey had spina bifida and his parent’s were told that he had water on the brain. Imagine working night and day to save your son. To go where no one had gone before. To believe you could do something but if you failed, your son would die. To be in the correct place. To know the correct people. Dr Holter was such a man.  He was fortunate to meet Dr Spitz and together they developed the Spitz-Holter valve or the Spitz-Holter shunt. Baby Casey was not to be saved but his dad’s work has helped millions.

Casey and His Mom

Casey and His Mom

In the 1960s, surgeons around the world treated the birth of an infant with spina bifida as an emergency. Open spines were surgically covered regardless of the time of day or night. Shunts were being  installed to control hydrocephalus. The early mortality rate decreased rapidly, almost reversing the earlier 90% mortality to a survival rate of 80%. My neighbor, in 1997, spoke of a younger sister who was born in 1965. She had Spina Bifida and lived to be 10 years old.

The ability to drain the bladder also had a positive impact on the lives of those with Spina Bifida. The modern catheter can be traced back 5000 years. Babylonians and Egyptians used catheters of gold. In the 1870’s or 80’s Auguste Nelaton, a physician to Napoleon III, developed a soft rubber catheter similar to those used today. By the early 1900’s textbooks were being written about catheterization and individuals like Morton and Elsberg were advocating intermittent catheterization with rigid cleanliness. Another discovery that made a positive impact on those with Spina Bifida.

In the 1970’s, to treat or to not treat was the question. Rigid criteria were in place to decide which infants with spina bifida would be treated and which would not. Infants who had the best chance of living a “meaningful life” were treated.  Those with more involved symptoms were not so fortunate.  Between May 1971 and December 1976 a study took place to decide if this selection processes was working. Parents were interviewed as part of this study.  A recommendation for or against treatment was made.  If the advice was against, the infant was sent back to the hospital or some went home with normal nursing care and treatment to only prevent suffering. Parents, put on the front line of the battle field. Parents participating in life choices that impacted so many of those alive today. This study taught the medical professionals that treatment could improve outcomes and thus treatment became the standard of care.

In the 1980’s parents were once again making decisions that would benefit those that were to follow. Around 200 expectant mothers participated in open fetal surgery at UCSF. The children in this study were closely studied, with the results making a difference for the next generation. These kids are around 13 years of age today. I have met several of the parents from this study.  Their stories are rich with information on how decisions and information affected their role in the study.

We can learn from others, if given the chance. In 2009, the First World Congress on Spina Bifida Research and Care took place in Orlando, Florida. During this landmark meeting, researchers and clinicians from around the world gathered together.  They discussed clinical and basic science research aimed at improving the care of individuals with Spina Bifida. Conferences for those able and willing to learn have and are taking place all over the world today. At these conferences, I have had the honor of meeting the parents that stood their ground and won the right for all kids with Spina Bifida to receive nursing care for cathing in public schools. I met a mom who fought all the way to the highest court in her state to have her daughter ride the same school bus as her peers.  Unfortunately; she lost-but she tried. I have met a mom who spoke up and improved the accessibility at her son’s high school foot ball stadium. A mom who battled to have doors in her school system fitted with lighter doors so the special education kids could open them.

It takes courage to stand up and make a difference. I salute those that have had the courage to try.

Resources are listed below:

http://igitur-archive.library.uu.nl/dissertations/2006-0329-200202/c9.pdf

http://adc.bmj.com/content/56/11/822.full.pdf

http://www.cdc.gov/ncbddd/orders/pdfs/207256-A_SpinaBifida_11_13FinalProof.pdf

http://www.uh.edu/engines/epi2582.htm

http://book2.neurosurgeon.org/?defaultarticle=&defaultnode=2636&layout=22&pagefunction=LoadLayout

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21 thoughts on “The History of Spina Bifida

  1. Reblogged this on Just Rollin' On and commented:
    Kudos to the person who wrote this Blog post. As a 26 year old with myelomeningocyle Spina Bifida and Hydrocephalus there are some things in here that I never knew. Fantastic work!

  2. Thank you my youngest daughter was recently told the child she is carrying tested positive for spinal bifida, she is going to UC Davis next week to get a second opinion. The resources you posted will be helpful.

      • i understand what you mean . i feel like i grow automatically to evolve with my child .It shows the depths of courage we show and the strength that comes from within. what we at first saw as hard work and no light at the end of the tunnel . we see was only us walking in fear until we learn about theses conditions and see that light is shining in our darkness . with clarity we can be the mums our children need s to be xx

  3. Pingback: 200 word press followers – A Blog Recap | Transitions and A Medically Complex Child

  4. my brother was born at home with spina bifida in 1965. his back was an open wound, the doctors would have like to let him die, but my mother insisted on treatment for him. He was my brother, nothing was unusual about that, and I was never made to feel different about him. My mum made sure he went to a ‘regular’ kids nursery when he was about 2. he had multiple operations for shunts (x 2 because first ones failed), an op to straighten his foot which was quite twisted, an ileostomy so he didn’t need nappies. he was in hospital a lot as a young child as he often got bronchitis. when we moved to Scotland, mum became local secretary of the Spina Bifida Association. We were involved in centres where kids with all sorts of disabilities and families could spend time together, support one another. She supported many families who did not know what they were entitled to to help their children. We had some funding to eg replace our bathroom door with a sliding one to accommodate the wheelchair. He went to a school for children with disabilities, and we realised he was going blind due to the hydrocephalus putting pressure on the opticaln nerve. His teacher taught herself braille so she could teach him. We got involved wit people trying to develop new equipment for spina bifida/wheelchair bound children. I remember a hand powered trike that my brother tried, and very much enjoyed having some independence. When he was 13, the local school said they could do no more for him and it was recommended that we send him to the Royal Institute for the BLind school in Edinburgh. The first weekend he was due back, the escort on the train refused to take him because he was in a wheelchair. My dad went to pick him up the Saturday morning, and my mum made me go with my dad – I think in the vain hope that he might take the road steady. We did it in 2hrs flat – and this was before the main dual carriageway was installed. the decision was made, we would move to Edinburgh so he could come home easily at weekends. While there, it became apparent that his back was curving, putting pressure on his heart and lungs. The doctors recommended an op, otherwise he would die in his early twenties. He died during the op – he was 12. He basically could not breathe lying on his front. The surgeon noted that his blood was blue when he made the first incision. I often wonder if they just let him die. Everyone tried so hard. I recently went through some of my mum’s things and found a bundle of letters of condolence – so mant people wrote to her, he touched so many peoples lives. I feel proud of that recognition for them both.

  5. I have Spina Bifida with hydrocephalus and last year I celebrated my 50th birthday. Luckily I was born in Australia where the doctors were able to save my life. I’m confined to a wheelchair with bladder problems, paralyses etc. But at least I’m alive and I’ve lived as full a life as I can. My older brother who is not disabled had two healthy kids too. So that was a relief. Their mother took folate pills during both her pregnancies which I feel ensured that both kids werent effected by SB.

  6. I am preparing a short presentation at the Society for Research into Spina Bifida and Hydrocephalus annual Scientific Meeting in Stirling, UK. I would like to quote from your opening paragraph as I think it exemplifies the thrust of the Society over the years. The group first met in London, UK, in 1957 and has held an annual scientific meeting ever since then. John Holter, Casey’s dad, was a life long supporter and very much a ‘father figure’ to all. I hope it is acceptable to you that I should use your words.
    Ewen MacKinnon

  7. This is extremely interesting. My mum’s two sisters both died of spina bifida and hydrocephalus at age 18 months and 8 months respectively (the elder in 1957, and the younger, after whom I’m named, in1961, I think). My grandparents didn’t talk much about their experiences (for probably personal and social reasons of the time, grief was something they did pretty much privately). But we’ve recently been putting pieces together to find out more about them. Didn’t realise the late 50s early 60s was so pivotal in the development of understanding and treatment of the condition. Thanks for providing this info and helping me to understand a little more of the lives of two aunts I never met.

  8. Thank you so much for taking a stand. In doing so, allowed parents like me and many others to stand confident knowing we will be heard. I have a daughter that has Spina Bifida and I am SO GLAD I stood my ground to keep her even though the Physicians advised me 3 times to terminate her. She is not 25 years old and very independent. Lovie does have some challenges, but she never allows it to let her down.

    Having a special needs does not mean one deserves to be treated unfairly. That you for this article.

    • My daughter who is four also has Spina Bifida. The doctors did bring up the option of termination which I considered. I was a first time mom at the time and confused about what to do. I’m glad I didn’t terminate in the end.

  9. very intersting text. unfortunately, SB still a big problem in a rich country like Algeria. even if surgical care exist but very delayed ( mean of 5 months ) others multidisciplinary care doesn’t exist.at all. infants often dies from urologic or respiratory malfunction at lowers ages. it seems like if we are in the sixtees. Kadi neurosurgeon

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