A life well-lived


Pour mes lecteurs francophones: cette publication traite du décès récent de Geordie Henry, un jeune garçon atteint de paralysie cérébrale dont la courte vie a touché de nombreuses familles.

 

In 2006 I went back to University to get a Master’s degree in Law with a specialization in biomedical ethics. My Master’s thesis was on informed consent in neonatal intensive care.  I spent some time in NICU, both in Montreal and Ottawa, observing the decision-making process involving severely sick or impaired newborns, their parents and their medical caregivers.It’s never long before any discussion of neonatal bioethics veers into neonatal euthanasia or the killing of severely disabled newborns. After all, Canada’s abortion laws — or absence thereof — allows abortion until the baby is born alive and viable. Some have made the argument that a passage through the birth canal shouldn’t be such a big deal. Parents who would have been allowed to abort their disabled baby until the previous day should be allowed to request euthanasia once their child is born and the disability discovered. Think this argument is far-off? It’s been made in court, at least in the U.S. I couldn’t find a link — can’t remember the name of the case — but parents in the U.S. did sue a hospital to request that life-sustaining treatment be denied to their impaired newborn. Their principal argument was that had they know of their child’s trisomy, they would have requested an abortion and it would have been fine (true enough). Even here in Canada, a recent court decision imposing a suspended infantice sentence to a mother found guilty of killing her newborn son mentioned that:

The fact that Canada has no abortion laws reflects that “while many Canadians undoubtedly view abortion as a less than ideal solution to unprotected sex and unwanted pregnancy, they generally understand, accept and sympathize with the onerous demands pregnancy and childrbirth exact from mothers, especially mothers without support,” she writes.

This “sympathy” for the challenges of motherhood not only informs our tolerance of abortion but furthermore — according to this judge — our tolerance of abortion informs our tolerance of newborn infanticide.

This is a rather long preamble to say that discussions of neonatal euthanasia are never far below the surface of neonatal ethics. There is a sense, no doubt rooted in compassion, that some lives are not worth living, that some infants are better off dead. We have an uneasiness with what we perceive to be lives of suffering and as difference is slowly but surely erased through prenatal screening and abortion, we grow-up and grow-old without the experience of loving and caring for a disabled child (our’s or that of a close one).

All these thoughts came back to me over coffee this morning as I wiped tears reading the obituary for Geordie Henry in the Ottawa Citizen. Geordie’s disability was pervasive:

Geordi, then 12, was born with severe cerebral palsy, scoliosis, microcephaly – an abnormally small skull – and a seizure disorder. Because his muscles were tighter than violin strings and his hips were dislocated, he did not bend.

I’m sure that the medical staff had many discussions about Geordie’s prognosis for an acceptable quality of life. I’m sure that some even thought that he may be better off dead. But his story shows, as so many others do, that even lives of suffering have purpose. The purpose may not be to accomplish great things but to draw others to greatness. Too often the beauty and generosity lay dormant in people until something or someone stirs it up, a little like chocolate syrup at the bottom of a glass of milk. It takes people like Geordie to give purpose not only to their own lives but to so many others!

Thank you Geordie for a life well-lived.

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4 thoughts on “A life well-lived

  1. Barb

    Veronique,
    I love how you expressed this: “But his story shows, as so many others do, that even lives of suffering have purpose. The purpose may not be to accomplish great things but to draw others to greatness.” I wonder how many times the value of a life lived such as that of Geordie, and the “great” he inspired in others enters into quality of life discussions in the NICU? When parents love and are willing and able to care for a severely disabled child, why is there no recognition in the medical community of the value of this sacrifice to the family and to society at large?

    John 9:
    Jesus Heals a Man Born Blind
    1 As he went along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”

  2. What an excellent post! Thank you so much for writing this. I am a fellow mom of twins… I have 7 children, though one has gone on to heaven. She wasn’t as disabled as Geordie, but she had a seizure disorder, and as a result, she was very high needs. She died just short of her 2nd birthday, suddenly. She changed me forever. She made me a stronger person, a more selfless person. And she made a huge impact on her siblings and all the other people in her life as well.

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