Dr Barrington draws attention to this well written open access commentary #MedTwitter #Neonatology #Disability #QoL A good life cannot be predicted from a brain scan!
https://twitter.com/neonatalresearc/status/1308847650377289729
Neonatologists often stare at seeming disasters early in the life of a newborn. Parents are distraught and ask how the road ahead would be? We are tempted to carry out tests and scans, lean on our personal experience and give our opinion: This itself has consequences 2/n
Research in keeping with the World Health Organization’s definition of QoL (a child or parent’s perception of their life) shows that disability severity has little relationship to life quality 3/n
“..Parents often hear this when you try and ‘prognosticate’ QoL for a sick neonate based on scans and tests.
‘If your child survives, they will have a bad life, and by extension you will too’.4/n
‘If your child survives, they will have a bad life, and by extension you will too’.4/n
Further.. “poor QoL prognosis hampered or delayed parents’ ability to see, or invest in, their child’s happiness and acceptance by others”. So we not only ‘label the child’ we also influence the way the parents may cope and enable themselves and their child 5/n
Emotional well‐being, peer interactions, parental adaptation, and community support are much more powerful predictors of whether a child is likely to grow up to have a good life 6/n
Personal Reflection: 1. choose your words carefully, they are heard! 2. Tests = poor black & white snap shots 3. Families need a kinder society for their kids to succeed - exert influence in that sphere. 4. Never take away ‘hope’ from anyone unless you are absolutely certain n/n
onlinelibrary.wiley.com/doi/full/10.11… not only a must read for #Neonatologists #Obstetricians but for anyone who has a stake in society that we are building for the future.
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