"It's almost like losing a child"

There are no words. From this UK Times piece, via troubleinchina:

Nine-year-old Daisy entered hospital in 2005 with a tooth infection, which turned septic. The hospital failed to supply the most basic medical care, giving Daisy neither food nor liquid in sufficient quantities. When she began gasping for breath the hospital told the parents that she would be transferred to intensive care, but this never happened.

It turned out that this was not an accident, but deliberate, and an official report on the case is being prepared by the ombudsman. As Daisy’s mother, Amanda Healy, told me: “The staff later admitted to us that they had ‘misjudged her quality of life’.” In other words, they had acted under the belief that Daisy - who loved and was loved by her parents and who, in Amanda’s words, “adored just waking up in the morning” - had a life not worth living and therefore not worth fighting to preserve.

One member of the hospital’s staff had said to Amanda, when she complained about Daisy’s lack of treatment: “People like you should realise that children like these are going to die sooner or later.” The remark that most shocked Amanda came from a doctor who was actually trying to be sympathetic, after Daisy had eventually died of a pulmonary haemorrhage: “It must be awful; it’s almost like losing a child.” It was the charity Mencap that put me in touch with Amanda Healy: hers is one of a number of similar cases involving what it calls “death by indifference” that it is pursuing on behalf of the bereaved parents.

The original piece goes on to note:

Yet even those who think of themselves as sympathetic can be astonishingly insensitive - in the nicest possible way. I couldn’t help noticing how many people expressed the view that the death of a totally dependent child with multiple disabilities, including an undeniably distressing form of epilepsy, must also have come as a relief to Mr and Mrs Cameron.

I too am the father of a child with a congenital disability - my younger daughter, Domenica, has trisomy 21, also known as Down’s syndrome. When she was born, an acquaintance who had a child with cerebral palsy told me: “Your problem won’t be that you will not love your new daughter, but that you will love her too much.” He was right, of course: it was a salutary warning not to neglect the needs of siblings.

Love should never be confused with pity, a sentiment we feel only for those whom we really don’t know at all. It infuriates me that children such as Domenica are invariably described as “suffering from Down’s syndrome”. In what way are they suffering? They have no disease. They have no ailment to “cure”, except - via the process of antenatal screening - their very existence.

What underlies this misplaced pity is a kind of selfish empathy. Someone sees a child lolling in a wheelchair and thinks he himself would rather not have been born than exist in such a condition - and so he decides that it would have been much more humane never to have allowed that child to have been born. He does not, however, consult the child.

j