Paediatric intensive care is an environment cloistered and away from normal experience. Few children and their families suffer the misfortune and enormous burden that comes with being there. Parents acutely feel the loss of control that comes from not being able to undertake the normal cares that their child needs. It's a stew of anxiety and awkward politeness with people a family doesn't know. A team of strangers undertakes to protect their child's life, to make them better. That is supposed to be the deal isn't it? But parents at the bedside can see that intensive care is invasive and unpleasant. The experience can drive a wedge between the most devoted couples.
The primal rawness of the grief of parents on the death of a child is unchanging and hard to witness. Many who work in intensive care find it hard to accept this failure to parents. Sometimes doing more leads to more misery. Eventually someone asks: are we doing the right thing? Where a decision is unclear the parents are held to speak for the best interests of the child but where there is disagreement the opinions of the courts must be sought. The agonising decision of RB's father to drop his objections to withdrawing life sustaining treatments is lump in the throat stuff.
The author is a consultant paediatrician and honorary secretary of the Paediatric Intensive Care Society