Posted on 04/22/2009 5:42:07 PM PDT by Pinkbell
TORONTO, April 9, 2009 (LifeSiteNews.com) - A two month-old child at Toronto's Hospital for Sick Children, described in the media as "dying," has defied doctor's predictions and continued to live after the removal of a respirator. The respirator was removed in the expectation that the child would stop breathing, and that her heart could then be harvested for transplant. Her parents have expressed their disappointment that another child who is being cared for at the hospital will now not receive their daughter's heart.
The case has created a stir in Canada, with numerous commentators debating the ethics of the case. Some disability rights campaigners have pointed out that the child's condition is not "terminal" and have warned that in seeking to make the girl an organ donor, the hospital may be making a "quality of life" judgment about the child. They are also concerned that the issue is being inflated in the public mind by the media's misrepresentation of the child's condition.
Kaylee Wallace was born with a condition called Joubert Syndrome, which causes a malformation of the part of the brain that that controls balance and coordination. Among the symptoms of Joubert Syndrome is an abnormal breathing pattern which means that Kaylee requires assistance breathing while she sleeps. But medical literature on the disorder does not describe it as a "terminal condition." Indeed, depending on the severity, some patients recover normal sleep patterns later in life.
Nevertheless, 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.
Kaylee's parents, Jason Wallace and Crystal Vitelli, have asked doctors to try again. Wallace said, "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."
Wallace said that he and Kaylee's mother were distressed that an impression has been created in public that they want their daughter to die. He said that he is torn between wanting to bring home his daughter to live a healthy life, and, barring that possibility, of ensuring that his daughter's heart goes to someone else.
He said, "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."
Nevertheless, Wallace has also spoken of his concerns that if his daughter lived she would not enjoy a high quality of life. He told the Globe and Mail that if he and his wife had known that their child suffered from this condition, they would have aborted. "If we had seen these ultrasounds results, we would not have considered bringing such a child into the world," he said.
However, he also told the Globe that he became infuriated at a doctor when the doctor suggested withholding nutrition and letting Kaylee "die with dignity."
Dr. Jim Wright, chief of surgery at the hospital told reporters late Tuesday that Kaylee is no longer a candidate for a heart transplant, although this situation could change.
Under the "Non Heart Beating Cadaver Donor Protocol," observed in Ontario hospitals, organs can be removed from a patient after as little as five minutes after the cessation of a heart beat. Dr. Wright said, "If legal death occurs, then we will remove the heart and proceed with the transplantation."
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.
Because of the Joubert's Syndrome, Kaylee suffers from apnea, a common sleep disorder, especially among adults. But 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?"
Neither the National Institute of Neurological Disorders and Stroke (NINDS) nor the Joubert Syndrome Foundation describes Joubert's Syndrome as a "terminal condition." Moreover, the National Institutes of Health (NIH) said, "Although some infants have died of apnea, episodic apnea generally improves with age and may completely disappear."
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."
Stephen Drake asked whether the possibility of treating the apnea was ever seriously considered. More urgently, he asked, "Given the possibility of improvement of apnea over time, why is ventilator assistance being withdrawn?"
The case is further complicated by the fact that critics of the Non Heart Beating Cadaver Donor Protocol have said that it is nothing more than a license to remove organs from living patients.
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.
"The question of organ donation of vital organs is a very serious question. To ensure the successful transplant of a vital organ, such as the heart, the vital organ needs to be living and healthy.
"To remove a heart from a person after 5 minutes of cardiac death is not assurance that the person who the heart was removed from was actually dead. There have been instances where a person experienced more than 5 minutes of cardiac death and yet their heart began beating again on its own."
Ping!
That wouldn't matter in Pinellas County, Florida.
I remember the first thread, everyone was sure she would die. I wrote, lets wait until she dies before we cut her heart out.
Boy was I right.
sleep apnea is basically what she has
BARBARIANS!!!
Ghouls!
I lived sleeping scrunched into the corner of the couch with my daughter in my arms so I would know if she were having trouble breathing and I would be there to get her going again. I can’t believe a mother would just say “Oh, just go ahead and let her die.”
I agree. I can’t believe her parents! The dad admits they would have aborted her! Then the doctor suggests starvng her to death!
I have sleep apnea.
Give her to me. We can stay up together.
Thanks. I did a title search; I must have messed it up!
These parents are the leftist death cult darlings.
Kaylee's parents, Jason Wallace and Crystal Vitelli, have asked doctors to try again. Wallace said, "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."
I had also posted it and the search missed it.
Thanks.
The mods can lock or delete if they want.
God bless you, your comment brought tears to my eyes.
My beautiful daughter was born with choanal atresia (unilateral, luckily), which meant that her breathing was compromised from birth. I slept near her every night so that I could hear her breathing, or if she turned over from her back (since sleeping face down could be fatal) for a couple years until she was able to handle anaethesia and have the blockage opened up. She's a vibrant 15 yr-old now.
BTW, I have mild sleep apnea myself, just annoyance level. Good luck and good health to you!
It really sounds as if, contrary to what the father says, her parents want her to be killed, ASAP.
Poor child. Maybe if the parents don’t want her, she really should be given up for adoption.
I also have sleep apnea. It hasn’t killed me yet.
What he really meant was, if his daughter lived, THEY -- the parents, would not enjoy a quality of life, because the little girl is such a burden on them.
Joubert Syndrome is a rare, genetic disorder that affects the area of the brain that controls balance and co-ordination.
The disorder is characterized by agenesis (absence) or hypoplasia (underdeveloped) of the part of the brain called the cerebellar vermis and a malformed brain stem.
The most common features of the disorder include ataxia (lack of muscle control), an abnormal breathing pattern called hypernea, sleep apnea, abnormal eye and tongue movements, and hypotonia.
Other malformations such as extra fingers and toes, cleft lip or palate, tongue abnormalities, and seizures may also occur.
God have mercy on these parents for their cowardice in handling the child God has placed in their lives—to the extent that they actively seek her death in an effort to “humanely assist” another child. Because their daughter is not “perfect” she is unworthy of life...how sad. God have mercy on their souls; God bless their sweet daughter!
Exactly.
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