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?”
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.
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.
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