Kaylee Wallace: Disturbing Coverage and Unasked Questions

Many of you in Canada at least, like many of us in Canada, will have been following the deeply disturbing story of “Baby Kaylee”, which has been the lead story on CBC’s The National for the past three nights. The ever-perceptive folks at Not Dead Yet have posted the following probing blog on the story, and the story of the story, which should be of interest for those who know and don’t know about either. Below is a taster of the post, which you can get in full from the Not Dead Yet blog itself.

There are so many disturbing and tragic aspects of this case itself (though not quite those that the CBC and other major outlets for news have highlighted), and in how it has been picked up and covered, that it might be hard to know where to start. Well, by reading on, for a start:

Once in awhile, a story hits the news that is so heartwrenching and tragic that it seems rude and cold to ask questions – let alone challenge – elements of the story. Often, this is exactly the time that hard questions should be asked.

Right now, there is a life-and-death drama playing out at the Sick Children’s Hospital in Toronto. Kaylee Wallace, who is two months old, is receiving palliative care at the facility. On Tuesday, there was an attempt to harvest her organs under the “Donation after Cardiac Death” (DCD) or “Non-Heart Beating Donation” (NHBD) protocol. In this protocol, an individual’s organs are harvested soon after the heart has stopped beating. The organ harvesting is called off if too much time elapses between removal of a ventilator and stoppage of the heart.

On Tuesday, Kaylee continued to breathe after being taken off a ventilator. The problem was that she stayed awake – since her breathing only stops when she sleeps. (If you think you know a name for that condition, read on)


2 thoughts on “Kaylee Wallace: Disturbing Coverage and Unasked Questions

  1. Many of the “facts” presented by the media in this case simply do not hold up to the light of day. Baby Kaylee was not “brain dead” and it would be difficult to see how she would reach any reasonable criteria for cardiac death while her heart was still viable for transplant to another baby. Most babies with central sleep apnea due to Joubert syndrome survive it and outgrow it. Some babies with Joubert syndrome do very well. A few have completed college. Why was this infant described as terminally ill? There is no doubt that Kaylee was at-risk but being at risk is not a terminal condition. If, as claimed, she had a terminal condition, what was it.
    The fact that Kaylee did not die as planned is being presented as some kind of miracle. Isn’t it equally possible that the doctors who claimed that she would die were just wrong and gave the parents were given bad advice.
    Ironically, there are thousands of babies who use apnea monitors to protect them from SIDS (in spite of a lack of evidence that they offer any significant protection). Why is the risk of fatal sleep apnea seen as a reason for sacrificing this baby, if it isn’t a good reason for letting all the others die?

  2. Here’s a pretty troubling quote, from the father, as quoted in a Canwest news story “Sick infant Kaylee will stay off life support”:

    While Kaylee’s parents and doctors agreed Kaylee’s condition is deteriorating, Wallace railed at the difficult decision and the dilemma they feel doctors have presented them. “After all these days and weeks and months of them telling us, hands off and let her pass away, in that sense, now them telling us we should even consider putting her back on (the) biphasic to support her breathing for a year because these babies sometimes tend to get better as they mature in age.”

    The problem is not the father or parents more generally, but understanding how it is that they have been put in that situation. Is Sick Kids just reacting to the unfolding complexities of Kaylee’s condition, as our typical trust in their expertise would naturally suggest, or is there something more to be understood about both their initial prognosis that was read as “hands off and let her pass away” by the parents and the advice–which was also true 2, 6, or 12 months ago–that “these babies sometimes tend to get better as they mature in age”. To me, this is one of the most disturbing parts of this story.

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