Parents Disappointed When Child Lives After Removing Her Respirator
Posted by Duane Lester on Apr 13th, 2009 • 1,027 views Clicks
Imagine if you were told that, as a result of a genetic disorder called Joubert syndrome, your two month old daughter would die without the use of a respirator. Imagine if you were told that without it, she would stop breathing.
Now compound that with the fact that another child nearby needs a heart and your daughter could be the donor, if only she were dead. The doctors are telling you to let your daughter “die with dignity.”
What do you do?
Faced with the same situation, Jason Wallace and Crystal Vitelli chose to remove the respirator and let their daughter Kaylee stop breathing.
She didn’t:
…on Tuesday, doctors removed the respirator and Kaylee was expected to fall asleep and stop breathing. After she stopped breathing, her heart could be removed shortly after cardiac arrest. But Kaylee did not fall asleep and continued to breathe, causing doctors to remove Kaylee from the organ donors’ list in accordance with the hospital’s ethics policies.
A cause for celebration, right? This is where it takes a turn towards morbid. The parents were upset she lived. They asked the doctors to try again.
Consider the following quote from the father:
“If she’s going to die, we got to keep trying.”
“I want my child to pass on because she can’t survive, and to save that child.”
and
“If the public does not understand that our daughter is very sick and has a likelihood of passing away, and we want to save another child if we 100 per cent can’t save our own, then they are lost and they need to rethink their own lives.”
Contrast that with this one from later in the article:
Jason Wallace told media that apart from her difficulties during sleep, Kaylee is a “vibrant baby.”
“She moves, she wakes up, she opens her eyes, but when she sleeps, she essentially dies,” her father said. “It’s hard watching her be a vibrant baby. When she goes to sleep, the machine does the rest.”
Folks, when I go to sleep, I use a machine to breathe. So does my older brother, my younger brother, my mother and thousands of others. The condition is called apnea. This is why Kaylee stops breathing when she sleeps.
This is what she was to be killed for.
She still lives. On Sunday she “was listed Sunday in stable condition, mostly breathing on her own.”
Prior to that, her father “told the Globe and Mail that if he and his wife had known that their child suffered from this condition, they would have aborted.”
So really, is this a matter of saving another child’s life or was it about quality of life?
Joubert syndrome isn’t a terminal illness. Were the doctors pressuring them because they felt they child’s life wasn’t worth living? Or were they simply wrong?
Wallace claims that “it was also suggested that he and Kaylee’s mother would have to consider how much money is being spent caring for the baby and ‘that it would be better utilized on another child.’”
Welcome to socialized medicine, where medical decisions are made based on the amount of money being spent vs. the quality of life the providers expect you to lead. Combine that with the obvious lack of respect for life shown by the father and you find a little girl fighting for her life and proving everyone wrong.
The parents now want to put this all behind them.
How can they do that? They still have to explain to their daughter why they not only sat by to let her die, but were disappointed when she didn’t.
And the ethical side of this isn’t going away:
On their blog, the disability rights organisation Not Dead Yet said that the media has helped to create an impression that Kaylee is “dying” by manipulating the facts to justify in the public mind the removal of her organs.
and
Stephen Drake of Not Dead Yet points out, “Literally thousands of people with apnea in the U.S. and Canada use various devices to assist their breathing when sleeping.”
“Here’s where I ask one of my rude questions: Is the word apnea being avoided because people don’t associate it with ‘dying’, but recognize the term as covering a variety of treatable conditions?”
and
Alex Schadenberg, director of the Ontario-based Euthanasia Prevention Coalition, warned that the situation has even larger implications than the life of a disabled infant and that “the reality may be a little different than what the news reports are telling us.”
“Since Joubert Syndrome is a rare condition that is not typically terminal in nature, it is likely that the parents were given a worst case scenario from the specialists that did not correspond with reality,” Schadenberg said.
This isn’t a black and white issue. Mistakes were made because ethical lines were blurred or crossed. Doctors appeared more concerned with saving one life at the expense of another they deemed undesirable.
And let’s not forget the emphasis placed on the cost of maintaining Kaylee’s life.
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