I’m referring to the storybook stork, the one that safely and smoothly delivers bundled new born infants into their parents’ arms – the story that a parents tells their children when they asking uncomfortable and complicated questions about from whence they came. Well unlike in the stories the reality is that sometimes the stork’s delivery doesn’t always go smoothly, sometimes it’s rough, and the infant suffers along the way. Two such newborns, Kaylee Wallace and Lillian O’Connor, unfortunately both suffered very bumpy rides, in that their development has proceeded far from “smooth and safe.”
Kaylee was born with an extremely rare brain condition known as Joubert syndrome. Kaylee’s brain stem is not and will not completely develop, because of this she is now incapable of breathing on her own – she must be attached to a breathing machine in order to survive. At one point her natural breathing stopped 100 times an hour. Lilly on the other hand was born “with a congenital heart defect called truncus arteriosus and has been given only weeks to live.” Although Lilly will survive and may progress to be for the most part a completely healthy individual if she receives a heart transplant. Faced with no cure, no other options, and Kaylee’s eventual death her parents decided to remove her from life support and, upon her passing, have her heart donated to Lilly, who’s touching, compelling, and saddening story they had read about in a Toronto news paper (the Hospital where both babies are located is in Toronto). Kaylee’s parents took solace in the fact that the death of their daughter, which otherwise would have brought about nothing but remorse, would now be giving life and happiness to a family in a similar situation as their own.
Although the circumstances got increasingly more complicated, since initially the hospital would not qualify Kaylee as an appropriate donor. After public outcry the hospital reversed its decision and allowed the transplant to go through. But to add another even more complicating factor, after Kaylee was removed from her breathing apparatus she survived for more than an hour under her own power, again making her under hospital regulations ineligible as a donor.
Regardless of the twists and turns that have occurred here it is important to reflect on the ethics that are embedded within this story. Yes, Kaylee and Lilly’s situation is touching and emotionally powerful in its sympathetic appeal, but it should be noted that public outcry alone was sufficient to make the hospital overturn its original decision to not allow the transplant. This effectively overthrew the hospitals protocols, which are based on maintaining the greatest safety, efficacy, and benefit that a transplanted organ can bring. Ethically, if the public believed it was the right thing and demanded it, should that mean that the hospital should have folded its carefully constructed principles? Also in normal cases where organs are transplanted from the deceased, anonymity is maintained to avoid biased selection, by the donor, of who should receive the donated organ. It is believed that doctors should make that decision based on their ability to determine who the organ would best serve with the best chance of success. Although Kaylee and Lilly’s situation seems far from ethically troubling it does set a precedent for the biased selection of organ recipients, which has the potential for scarce organs to be distributed along lines of race, gender, religion, socio-economic status or education level instead of simply to those who have been determined to need them most.
Personally I would like to witness this stirring transplant occur, but these important matters of ethical precedents should at least be addressed, as it appears that they were entirely overlooked by all but one out of thirty of the articles that covered this story.
Sources used:
http://www.torontosun.com/news/columnists/michele_mandel/2009/04/05/9009771-sun.html
http://www.torontosun.com/news/torontoandgta/2009/04/07/9045136.html
http://www.google.com/hostednews/canadianpress/article/ALeqM5gBE_Fo4Q8COxWBfjikp0fAPX61AQ
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The situation presented in this case is very complicated. Although Kaylee was able to survive for an hour without her breathing apparatus, I do not believe that warrants stopping the transplant procedure from taking place. It has already been proven that Kaylee cannot breath for herself and would quickly die if taken off her life support machines. Sure she could be kept alive artificially, but her quality of life would be awful. What difference does it make if Kaylee was able to breathe on her own for one hour. By stopping the transplant, the surgeons have caused the parents of both Kaylee and Lilly to undergo further emotional stress. They are riding on an emotional rollercoaster that is going to leave them scarred for the rest of their lives.
The situation is unfortunate, but surely its better to save one life, rather then let both babies die. The sooner that this issue is resolved, the sooner both families will be able to continue with their lives. It seems ridiculous that a time frame his placed on how long a patient survives before they become ineligible to be a donor. What difference does it make if someone can survive 15 minutes or 80 minutes without machine to keep them alive? Had the surgeons been delayed half an hour, Kaylee would have fallen within the time frame, and everything would have gone according to plan. However this would not have changed the fact that she could still have survived for an hour without machines.
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