My apologies for the unexpected short hiatus. I had a few too many offline issues to deal with last week to get to the blog. Barring unforeseen circumstances, the next couple of weeks should be better.
First, an update on Kaylee Wallace. Thanks to the public expressions of concern over her fate and whether or not she was actually “dying,” it looks like Kaylee’s life is on a new track. Here is pretty much the last word we have, from CityNews.ca:
Kayleee Wallace, a two-month-old girl that suffers from Joubert syndrome, was given just days to live. Her mother and father decided that they would donate her heart to another infant in need, one-month-old Baby Lillian.
But when Kaylee was taken off the respirator, the little girl kept breathing – all on her own.
On Sunday, Toronto’s Hospital For Sick Children revealed she was now in stable condition and no longer a potential donor.
Her father, Jason Wallace, spoke of the emotional rollercoaster he and his wife have been on in the past few days.
Earlier in the month, Wallace alleged that the hospital pressured him into making decisions that may not have been in his daughter’s best interest.
They were led to believe Kaylee’s prognosis was hopeless because of her rare brain condition.
Wallace now says he’s content with an apology he received from the hospital and acknowledged the challenges faced by doctors.
“It may be that Joubert is such a confusing syndrome that it confused them, even the best in the world,” Wallace explained.
Readers might have noted that a press release issued by the Canadian Association for Community Living (CACL) noted a history with the Sick Children’s hospital.
That history is revealed in a post at the What Sorts of People Blog. Most of the post is devoted to a press release issued by Barbara and Timothy Farlow, tying the current situation to the death of their own daughter, Annie, in 2005. Here is an excerpt from the release, which can be read in its entirety by clicking here:
Annie Farlow (May 25- Aug 12, 2005)
Annie’s death has led us to question the policies and practices related to the care provided to infants born with certain genetic conditions related to disabilities.
Our daughter Annie had a difficult prenatal diagnosis. We wished to provide treatment and/or surgery for her, only if it was in her best interest. Otherwise, we wished for her to have a dignified death. We met with several doctors before Annie’s birth and were assured of Sickkids’ policies regarding eligibility for surgery and ethical processes.
On August 12, 2005, our daughter died within 24 hours arrival at the Hospital for Sick Children. The events which occurred during those final hours were inexplicably tragic.
- No call was made to the ICU for an hour when Annie had a respiratory “crash”.
- A “Do Not Resuscitate Order” was entered without informed consent.
- Multiple violations in the procurement and documentation of narcotics are acknowledged to have occurred.
For more information on Annie Farlow’s death and the frustrating fight to get answers, please check out www.anniefarlow.com. –Stephen Drake
Glad to hear that the publicity for the situation helped Kaylee out. Hope she and her family continue to do ok!
Thanks. One small observation about language. At the top of the story about Kaylee Wallace that you posted, (from CityNews.ca)”a two month old girl THAT suffers” (my caps). I have been hearing “that” used instead of “who” for people for several months. It makes me wonder about de-humanizing people when someone becomes “that” instead of “who”. As a person with severe disability, I notice language in re people with disabilities in particular.
sanda,
thanks for pointing that out. I missed that entirely and I agree with you that the use of “that” instead of “who” should be treated with suspicion – especially given the context. –Stephen