This story here is heart wrenching and disquieting to me at the same time. It must be so hard to have a baby who can’t breathe–a baby who is not doing well.
Baby Kaylee continues to defy the odds this morning, breathing on her own for a second day after she was removed from a respirator in anticipation that she would become a heart donor for another infant.
But I’m quite uncomfortable with the juxtaposition with the other struggling baby who needs a new heart–and the idea that Baby Kaylee should become an organ donor so young. Thoughts?
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Andrea just got more uncomfortable: Read here:
Kaylee, his six-week-old daughter who a day before had been administered the last rites so her heart could be transplanted to another child at Toronto’s Hospital for Sick Children, looked up and gurgled Except for the heart-shaped Band-Aid holding a tiny breathing tube in her nose, she looked healthy and pink and hairless – not unlike her now famous father, who has been defying the hospital and holding public press conferences as he lobbies doctors to let his daughter’s heart go to Lillian O’Connor, who desperately needs it.
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Patricia adds: I have some sympathy for these parents – as appalled as I have been by some of the remarks the father has made, including the loving statement that there is no way they would have brought Kaylee into the world if her disabilities had shown up in a pre-natal ultrasound. That said, it wasn’t Kaylee’s dad who brought up the idea of the withdrawal of nutrition and hydration (i.e, starving Kaylee to death). What I’d really like to know and what I suspect we’ll never get is a full accounting of the part of the hospital and Kaylee’s doctors.(Part of the reason for that is patient privacy, which is not an illegitimate concern.) I’d sure like to know who told these parents their baby’s condition was “terminal.” Did anyone at any time actually offer the parents some information about Joubert Syndrome and suggest that maybe they talk to some parents who are raising a child with Joubert? Who suggested the withdrawal of nutrition and hydration? Why were they told (as they alleged in a radio interview yesterday) that as Kaylee’s condition worsened, decisions about their child’s care might have to be made for them? Who at the hospital raised the issue about the cost of the medical care required by Kaylee, resources that might better be used by another child? In short, just what the hell is going on at that hospital anyway?
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I don’t care how desperately Lillian ‘needs’ a heart (okay, I do, but in a different way), Kaylee needs it more. Where are the pro-choicers arguing for Kaylee’s right to her own body (including her own heart)?
That second article is downright creepy. “Quality” of life is so subjective. Who is he to say that she couldn’t have a meaningful life if she doesn’t have perfect health? As far as I’m concerned, this sort of thinking leads down the road of eugenics.
According to this article they actually decided who will get their child’s heart, and I think that’s ethically questionable. That’s the sort of thing that the hospital should be deciding, separated from emotion so that the one who needs it the most urgently will get it.
I looked up Jouberts syndrome, since none of the articles contain any real details on it. Fatalities are very rare, as long as it’s monitored. It’s not the kind of thing you just let your baby die for.
http://www.jsfrcd.org/
What is Joubert Syndrome? Joubert Syndrome is a rare, genetic disorder that affects the area of the brain that controls balance and coordination. 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.
http://www.ninds.nih.gov/disorders/joubert/joubert.htm
The prognosis for infants with Joubert syndrome depends on whether or not the cerebellar vermis is partially developed or entirely absent. Some children have a mild form of the disorder, with minimal motor disability and good mental development, while others may have severe motor disability and moderate mental retardation.
And apparently with some children the apnea improves with age. Until then, you put them on a breathing machine when they sleep. Is that so bad? I couldn’t even tell you how many people I know who go on breathing machines when they sleep; their quality of life is just fine! And as far as I’m concerned, quality of life isn’t dependent on whether a person is mentally retarded or not. It is a lie to even suggest that it is.
(Sorry for such a long comment.)
I agree that “quality” of life is subjective. Kaylee has a right to life and to keep her heart. It gets scary when people start deciding if your life is worth living or not. The thought that they’d turn you into an organ donor if that “quality” doesn’t meet their standards is scary too. I hope she keeps going and defying the odds.
“…a doctor suggested, three days after the diagnosis of Joubert syndrome was confirmed, that non-nutrition might be a possible route.”
“Non-nutrition” means causing death by dehydration/starvation. In other words, you stop feeding the baby so it will die. The Quebec couple who are suing for the “wrongful survival” of their disabled baby girl say the hospital should have stopped feeding her when she continued to breathe on her own after the respirator was turned off.
We can’t starve our healthy babies to death–that is murder. Why is “non-nutrition” an option for a disabled baby?
As Trish once wrote–it’s a big ole eugenic world out there. The disquieting part of the story grows. “Non-nutrition” for babies is not an option–disabled or not. Yikes.
I found this story very disturbing when I read it. On the one hand you feel sorry for the family of the baby who needs a heart, but I was sickened by the way Baby Kaylee was talked about in the article. Basically they are saying it is very inconvenient that she is continuing to live when we had hoped we could use her heart. Just horrible, my heart goes out to that poor little baby girl. (Oh, and can you imagine if someone suggested the “non-nutrition method” for getting rid of an unwanted pet!)
I hope Kaylee grows up to punch her father in the face. I mean, I’m not a violent person, but what kind of father actively lobbies for his daughter to die so her heart can go to another kid?
“Non-nutrition” is probably the creepiest euphemism since “final solution.”
The cover of the Globe and Mail was absolutely atrocious today. The headline was “The baby that wouldn’t die” with a picture of Kaylee.
On CBC radio while announcing the story, the newscaster made a Freudian slip saying “doctors had hoped Kaylee would die by now”. She actually said oops and changed ‘hoped’ to ‘expected’.
I nearly puked out my breakfast. The Globe story also mentions a woman with a 16 year old daughter who has Joubert’s. It states she had very serious respatory issue as a baby and has barely any symptoms now.
Keep fighting Kaylee! If you live, I hope these news stories aren’t too difficult for you to contemplate reading.
Brenda–we’d never, ever consider non-nutrition for a pet. As a society, we’d think that very inhumane. Imagine the poor thing hungry and thirsty–scratching at the kitchen door! (truly, it would be terrible. I do love animals.) Sounds like you need a Pet-P t-shirt. (But for people–when there’s a good reason… a really good reason–or if your name is Sheila…
https://www.prowomanprolife.org/2009/04/07/enduring-religious-doctrines-or-whatever-works/ )
Andrea, that is what gets me. I have two cats and a dog and I feel guilty if I’m a couple of hours late feeding them. To think that we as a society would countenance starving an infant to death is unbearable, and to have a doctor suggest this! Does he not remember the “first do no harm” oath he took? I hope that Baby Kaylee defies them all and lives a long and happy life! Suggested reading from me would be “The War Against the Weak” by Edwin Black, which is a history of the eugenics movement. This is the same mentality that we are seeing at work in the case of Baby Kaylee.
I am appalled to be Canadian,
It is allowed to take 2 LIVE infants into
an OR room with the expectations of coming
out With ONE LIVE HEALTHY ONE!!
If Baby Kaylee died on her own terms
by the Big guy in the skys clock
giving her heart to Lillian would be beautiful gift.
Trying to Hurry along a Death that might
not even happen is just plain SICK.
This is actually allowed in Canada..
WOW IM FLOORED!!!
What has the world become for
anyone to believe this is OK.
I am afraid to ask whats next..
I do not even know what to write. All I can think to say is I have a beautiful son with Joubert Syndrome. I enjoy him so much. He has positively impacted more people in 9 years than most do in a lifetime.