[This post is the continuation of our Knowledge Translation Tuesday. Guest author Lily Collison, author of Spastic Diplegia — Bilateral Cerebral Palsy, continues the series on her journey with her son and cerebral palsy (CP).]
For a multitude of reasons, I believe it is very important for parents of young children and adolescents and adults with CP to fully understand the condition. I was that mom who didn’t understand my son’s diagnosis and therefore didn’t know how best to help him. My adult son now needs to have a good understanding to best help himself. When I was invited to write for CPRN to expand its knowledge translation objective, Paul (Gross) asked me to first write about SDR in adulthood because my son, Tommy had just undergone this procedure. Once I’d finished that series of posts, I debated whether it was best to work back to childhood or start from childhood. I was also conscious of recent data which showed that people who themselves have CP–adolescents/adults with CP are the biggest single group (58%) in MyCP. In the end, I decided to go back to the start and follow a logical sequence of subjects from childhood to adulthood. Issues in adulthood to some extent build on issues in childhood. It’s like the Wordsworth quotation “The Child is father of the Man.“
Let’s start with the actual definition of CP. Over the years there has been much discussion of the definition of CP, and different definitions have been adopted and later discarded. The most recently adopted definition, published in 2007, is as follows:1
Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.
(Here is a link to a table explaining each term in that definition.)
CP is a lifelong condition and there is currently no cure, nor is one imminent, but good management and treatment can help alleviate some or many of the effects of the brain injury. When the brain injury occurs is important. The consequences of a brain injury to a fetus developing in the womb are generally different from those of a brain injury sustained at birth, which in turn are different from those of a brain injury acquired during infancy. It is generally accepted that only brain injuries occurring before the age of two or three fit the definition of CP. A brain injury occurring after that age is called an acquired brain injury. This cutoff is due to the differences in brain maturity when the injury occurs. In my son’s case I’m not certain when his brain injury occurred–he was born after an uneventful pregnancy and delivery–most likely it occurred during pregnancy.
Returning to the definition of CP, although this definition is very useful, I’m not sure it sufficiently alerts us to the secondary conditions that may arise in adulthood. As O’Brien, Bass, and Rosenbloom (2009) explained, the definition was developed to be used in childhood—it was not intended to infer that progressive problems might not appear in adult life.2
(The photo is one I took yesterday evening at Rosses Point, Sligo, Ireland, where I live. Yeats had close connections with Sligo. The hill in the left background is Knocknarea at 1,073 ft. Tommy was very proud when he first climbed it as a child.)
1Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M (2007) A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol 49 Suppl 2: 8–14.
2O’Brien G, Bass A, Rosenbloom L (2009) Cerebral palsy and aging. In: O’Brien G, Rosenbloom L, editors, Developmental Disability and Aging. London: Mac Keith Press, pp 39–52.