There’s an old Jewish proverb that that says- ” A mother understands what a child does not say.”
Nothing could ring more true, after events of the past days, whereby we learned of an urgent night court sitting to determine whether a health board’s decision not to do surgery on a terminally ill boy would amount to homicide. Thankfully, the judge did not rule this way and the decision to turn off the frail 7yr old boys life support was made.
I could imagine nothing worse than having to make this heart wrenching decision for whatever reason, but to have watched your child suffer in silence through out their life I could imagine nothing worse. The boy’s older sibling had also died after a long battle with the same rare disease. As the years passed, the condition began to cause irreversible damage to various organs. By the end, both were bedridden, unable to speak and in immense pain.
This mothers life was devoted to caring for her sick and frail children, every living breath of it. In October of last year, the lad had a feeding tube inserted because he could no longer swallow food or medication. Earlier this month, the tube became dislodged and the only solution was to operate. doctors said that without it he would die within days.
Senior doctors, nurses and a hospital ethics committee were unanimous that the tube should not be reinserted. So too, was the boys mother. The boys only form of communication was by flicker of an eye movement, but through all this pain and suffering, she knew and understood him. she said in her affidavit, read to the court; “He often screams out in pain. He is extremely fragile. He is uncomfortable if he is slightly too hot or cold. Passing urine and bowel movements hurt him. When he is being fed, the pain worsens horrendously due to acid reflux.” She said she was distressed about the intention to keep feeding him when she had seen him in chronic agony. A hospital director told the court that the mother was a “wonderful carer of her child, a child who she loves dearly.”
Justice Jill Mallon said she was satisfied it was not in the boy’s interest to have the operation and it would go against good medical practice. “It would be prolonging the dying period when … death is closing in. The operation will defer death, but not for long.
The boy departed this world the next day, to a better place, of that I am sure. The question is simply this..
Who knows best?