When my sister, Leigh, was born, the doctors told my parents she wouldn’t live past the age of 12 – if we were lucky.  That was in 1982.  There wasn’t a lot of research then on the causes and effects of the birth defect nor was there enough information regarding life span or quality of life, either.  My mother spent hours in the library researching the diagnosis from antiquated medical journals while my sister lay in the NICU for 6 weeks.  Leigh wore braces that were connected by a bar at the ankles 24-7 for months.  She underwent several shunt revisions before Kindergarten.  At each visit, the neurologists were in awe that she was progressing so fiercely.  Despite their original prognosis, Leigh was walking by the age of 2.

Twenty-eight years later, like everything in our technologically progressive world, the prognosis for those diagnosed with Spina Bifida is changing – rapidly.  As new technological advances are made, the quality of life of those affected is changing – for the better.   More complete and advanced research has provided families with a greater understanding of the life ahead of them. However, it seems life span of persons with Spina Bifida is still an unknown.

Recently, I read an article that discussed the “unchartered waters” that persons living with Spina Bifida faced because in our society there aren’t many “old” people living with the diagnosis.  Without adequate research/statistics (because of a lack of subjects), the article said, it is difficult to determine the lifespan of a person diagnosed with Spina Bifida.  The article cited a study from 2001:

One study published in 2001 looked at survival in children with spina bifida who were born between 1975  and 1979. In that group of 118 children, 76% were alive at 20-25 years of age. The most common cause of death was an unrecognized problem with function of the shunt. Remember, however, that treatments have continued to improve since these children were born. At this time we cannot be more specific than to say that most children born with spina bifida will survive at least into early adulthood.

According to Cindy Brownstein, CEO of the Spina Bifida Association of America, the majority of persons seeking services and support are young children, teens, and young adults.  There is a generation of young people living with spina bifida who are now entering adult society who must be taught how to live independent and productive lives and are seeking support do to just that.  No longer are doctors making arbitrary predictions about lifespan.

Making it to adulthood, a decade ago, wasn’t a priority for persons diagnosed with Spina Bifida.  Now, “they” are all grown up – and they need more programs that provide not just practical ways to navigate the world, but emotional support as well.  Persons with Spina Bifida are students, teachers, colleagues, and professionals.  They date.  They marry.  They raise families.  My sister, Leigh, is now 28, a student and will soon be a teacher.   At one time, she was the exception.  Now, it seems, she is the norm.

lk herndon


2 Responses to “Lifespan”

  1. Brent says:

    Early adulthood? I am wanting to hear living to be elderly. I just hope there will be amazing medical advances in the near future. I wish I could do more to speed things up. Any ideas?

  2. Jessica says:

    We have a family friend living with SB who is in her 60s. She is a college graduate who had a great career and has kids and grandkids. I doubt she would consider herself elderly though =)

Leave a Reply