A touch of cerebral palsy
- NEIL MARLOW, Professor of Neonatal Medicine
- Academic Division of Child Health
- School of Human Development, Level E East Block
- Queens Medical Centre, University of Nottingham
- Nottingham NG7 2UH, UK
- neil.marlow@nottingham.ac.uk
A mother came into my clinic with her ex-premature baby who had been through the mill of neonatal intensive care but appeared to be doing very well. After we had finished the consultation and I had praised her and her baby for the excellent progress they both were making, she asked me what I thought of another doctor's opinion, that her daughter had “a touch of cerebral palsy”. The physiotherapist and I agreed that her daughter did not have cerebral palsy, and I reassured her, but asked whether she hadn't been distressed at the diagnosis. “No” she replied “because you had always warned me of the risk”. Oh that breaking the news of cerebral palsy and explaining it to parents was so simple!
In a paper in last month's Archives of Disease in Childhood, Baird and colleagues discuss the thorny problem of how to disclose the diagnosis of cerebral palsy and how we might improve practice.1 In their study, dissatisfaction with the structure and manner of disclosure of diagnosis was reported by 20% and 23% of 107 mothers, respectively and 43% expressed dissatisfaction with the information given at that time. In particular, lower satisfaction was found among the mothers of more premature children, mothers with more severely disabled children and worse depression scores, and not surprisingly, those taking legal action.
Does this study have implications for neonatologists and what are they?
Improving current practice
Baird and colleagues develop guidelines for disclosure of diagnosis which are sensible and to a large extent derived form the work of Cunningham and colleagues over the disclosure of a diagnosis of Down's syndrome2: tell both parents together with their child and a third party if possible, in a private place without interruptions; offer parents a chance to be alone; be clear, direct, and honest; …
