Most humans do not like change, but the scientific reality of baby brain neuroplasticity demands a change in the timing of a cerebral palsy diagnosis. Why? Because specific CP treatment, in most parts of the world, is diagnosis directed. The result is that many babies with diagnosed early brain damage are denied lesion-specific treatments for 3 to 6 years. Yet, the exuberant change possible in the first 4-6 years has been recognized for decades. The first hemispherectomies were done in the 1960’s!
Trying to get an earlier diagnosis is difficult, largely due to well-meaning doctors who may be suspicious of CP but are unwilling to commit to either the type or potential severity of the problem. The almost universal cope out is to label the child with a diagnosis of Developmental Delay … often given with the advice to “Wait and See” how the infant progresses.
A developmental delay diagnosis gives parents access to funded Early Intervention programs that do fill an important need. But they do not provide early, focused lesion-specific cerebral palsy treatment without a diagnosis. This system is not good enough! The data is accumulating, but most NICU Follow-up and Early Invention Programs are either not reading the studies or not listening to parents who usually suspect a problem. In my long career, I have rarely surprised a parent with a CP Diagnosis. The vast majority of families given a diagnosis respond that they are grateful to have their suspicions confirmed and ready to do whatever they can to improve the baby’s condition.
So, what is the best way to change this established system of “wait and see”? The CP Alliance Research Foundation in Australia is leading the way with the evidence-based information and new research studies to back up the need to change.
The problem is that in my experience, many health care professionals are particularly resistant to change. The dirty little secret that we doctors rarely discuss is that if it is true that babies can be diagnosed with CP as early as 12 weeks corrected age, then all those “wait and see” doctors will have to accept that he or she has been handing out incorrect information for many years.
The key point is that although there are progressively more accurate means to diagnose neonatal brain damage, neonatologists and cerebral palsy experts have generally not changed their attitude about early, lesion-specific intervention. So, rather than waiting for a massive change of attitude, I suggest a change in the diagnosis. If a child has clinical and/or scan evidence of brain injury or maldevelopment, let us all agree to a diagnosis of “At Risk of Cerebral Palsy”. This will identify the need for lesion-specific handling and positioning instruction as well as timely introduction of specific therapies for the infant or toddler. No parent will sue for a wrong diagnosis if the child improves and I believe most families will cope better knowing that we all are doing our best to maximize a good outcome.
Some of the new treatments and technologies being developed will need further study to assess their usefulness in babies and toddlers, but in the meantime, some interventions are painfully obvious. I will write more on this in future posts, but I summarize a lot of the intervention options in my book, The Boy Who Could Run But Not Walk: Chapter 11; What To Do in the First Four Years.
I look forward to your comments and stories of your experiences obtaining a CP diagnosis.