The prevalence of a condition is how many people in a defined population have the condition at a specific point in time. Prevalence rates can vary geographically. A 2013 worldwide review found that the overall prevalence of CP was 2.11 per 1,000 live births. It also found that the prevalence of CP has remained constant despite increased survival of at-risk preterm infants. A recent (2019) study, however, reported that the birth prevalence of CP declined across Australian states between 1995 and 2009. The percentage of children with CP whose disability was moderate to severe also decreased. This is encouraging. Some further points:
- CP is the most common cause of physical disability in children.
- Males are at higher risk of CP than females. Recent data from Australia found that 57 percent of those with CP were male, while males represented 51 percent of all births. This may be because males have certain nerve cell vulnerabilities that may result in CP. It is noteworthy that there are frequently more male than female participants in CP studies.
- Relative to its prevalence and its impact on the life span of those with the condition, funding for CP research is very low. The National Institutes of Health (NIH) is the primary US body responsible for health research; it reports research funding by condition. Although the reported prevalence of CP was three times higher than that of Down syndrome (0.3 percent versus 0.1 percent), funding allocated to CP research in 2018 ($26 million) was significantly lower than that of Down syndrome research ($60 million). Funding estimates for 2019 and 2020 are $28 and $24 million, respectively, for CP and $72 and $65 million for Down syndrome.
I believe it would be beneficial if, once a child is diagnosed with CP (up to three years after birth), there were some way of conveying this diagnosis to the obstetrician who provided care to the mother and infant during pregnancy and birth. This information may inform future practice. Or parents could consider giving consent to have their child added to a properly governed regional or national CP register and allowing appropriate access to medical records from pregnancy and birth.
Though I did not know what caused my son Tommy’s CP, in the early days I wasted a lot of time feeling guilty. I had worked very hard and was stressed during his pregnancy, and I felt responsible. Today I no longer feel that sense of guilt. I didn’t knowingly do anything wrong: my life circumstances were such that I was very busy, and besides, there are multiple possible causes of brain injury. I encourage parents to waste no time on guilt—we are where we are and we must move forward.
The above is an extract from Spastic Diplegia–Bilateral Cerebral Palsy available here.