Once in awhile, a story hits the news that is so heartwrenching and tragic that it seems rude and cold to ask questions – let alone challenge – elements of the story. Often, this is exactly the time that hard questions should be asked.
Right now, there is a life-and-death drama playing out at the Sick Children’s Hospital in Toronto. Kaylee Wallace, who is two months old, is receiving palliative care at the facility. On Tuesday, there was an attempt to harvest her organs under the “Donation after Cardiac Death” (DCD) or “Non-Heart Beating Donation” (NHBD) protocol. In this protocol, an individual’s organs are harvested soon after the heart has stopped beating. The organ harvesting is called off if too much time elapses between removal of a ventilator and stoppage of the heart.
On Tuesday, Kaylee continued to breathe after being taken off a ventilator. The problem was that she stayed awake – since her breathing only stops when she sleeps. (If you think you know a name for that condition, read on)
The following excerpts are from the story on Kaylee Wallace in the Globe and Mail, just one of many media outlets covering this story. A brief survey I did of various articles indicates this portrayal is fairly typical of the coverage.
The enduring life of Kaylee Wallace unleashed a torrent of emotion yesterday as her father vowed to continue his fight to donate the dying two-month-old’s heart.
A transplant attempt meant to save the life of a second girl failed last night after Kaylee, who has a rare condition that causes her organs to shut down in sleep, stayed awake when taken off life support.
A little later on, we get more information:
Mr. Wallace and the baby’s mother, Crystal Vitelli, took Kaylee home two weeks ago, believing their little girl was well enough to leave hospital. Shortly afterwards, they were back. Her rare condition, Joubert syndrome, has left her unable to breathe while asleep without a machine.
“She moves, she wakes up, she opens her eyes, but when she sleeps, she essentially dies,” Mr. Wallace said. “It’s hard watching her be a vibrant baby. When she goes to sleep, the machine does the rest.”
This information is a little more accurate. In fact, when the reporter writes that Kaylee’s condition that “causes her organs to shut down in sleep, in the second sentence of the article” it is nothing except the wildest of exaggerations. But it does help to build the image of an infant that is dying.
It’s her breathing that stops. And if you think you’ve heard a word for that, you’re right. It’s called apnea – and there’s not a single quote in a single story from anyone that uses the term. Apnea is a fairly common disorder, although found mostly in adults. 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 what about Joubert syndrome? Is it described as a terminal condition?
I didn’t know, so I checked. I checked Wikipedia, the National Institute of Neurological Disorders and Stroke (NINDS), the Joubert Syndrome Foundation & Related Cerebellar Disorders and the Cleveland Clinic. None of these sources describe Joubert syndrome as “terminal.”
Here’s a brief overview from NINDS:
Joubert syndrome is a rare brain malformation characterized by the absence or underdevelopment of the cerebellar vermis – an area of the brain that controls balance and coordination. The most common features of Joubert syndrome in infants include abnormally rapid breathing (hyperpnea), decreased muscle tone (hypotonia), jerky eye movements (oculomotor apraxia), mental retardation, and the inability to coordinate voluntary muscle movements (ataxia). Physical deformities may be present, such as extra fingers and toes (polydactyly), cleft lip or palate, and tongue abnormalities. Kidney and liver abnormalities can develop, and seizures may also occur.
Prognosis:
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.
So what about that apnea? There’s a National Institutes of Health (NIH) document that shares some information about that:
Although some infants have died of apnea, episodic apnea generally improves with age and may completely disappear.
From where I sit, the hospital other professionals commenting on the story have a lot of explaining to do. Here’s my starting list of questions I want answered:
- How does this child’s disabilities differ from the majority of non-terminal children with the same condition?
- Was the possibility of treating the apnea ever seriously considered?
- Given the possiblity of improvement of apnea over time, why is ventilator assistance being withdrawn?
- Is this child really “dying” or is this a “quality of life” decision? Shouldn’t we try to be clear about which type of situation we’re talking about?
Meanwhile, there is another infant in the same hospital, named Lillian, who needs a heart. There are no guarantees that she’ll be the one to get Kaylee’s, if Kaylee’s death occurs in a way that makes harvesting possible.
But it makes it all the less likely there will be any serious questions asked about the seriously flawed coverage and public discussion of the drama playing out right now. –Stephen Drake
I asked myself the same questions before I read your article. I myself have Apnea and have lived for the past 5 years using a CPAP machine to control it. It works very well and my quality of life has been excellent since I started on it. Mind you, I am also in my mid-30’s. At a mere two months old, with a non-fully developed respiratory system, it is obvious that Apnea could be life threatening to Kaylee. From what I have read based on Mr. Wallace’s comments, she does not have this problem when she is awake, therefore (in my entirely uneducated opinion) it sounds as though she has Apnea and the level that Joubert Syndrome affects her is as yet unknown. I would hesitate to sign Kaylee’s death warrant without getting more answers based on my opinion alone.
But despite the questions that I think still need answering, my heart goes out to both of those little girls and their families. I cannot begin to fathom the emotional trauma they must be going through, and I can only hope with all my heart that things turn out for the best.
Thank you for this excellent commentary. It is the most refreshing and fact-based coverage I have read on the issue.
I am of the opinion that the hospital’s exaggerated statements about the child’s condition and the syndrome itself had convinced the parents that the child was imminently dying. Perhaps the parents choice to seek out media cause the doctors by surprised, with their pants down so to speak.
Conversely, maybe the parents didn’t want a baby with Joubert’s syndrome due to the association with disability. If that was the case and they were attempting to appease their conscience by saving a “normal” child with their “substandard” child’s organs, the situation would be truly horrific.
I am very disturbed by the news coverage, and mind you I am pro-choice. As a parent of two children with special needs (not Joubert), I have scanned for info on Joubert on the internet after hearing about this story on the news and came to the same conclusion…
Media coverage is not honest and complete about Joubert, but seems to push a message.
If the parents do not want to raise a disabled child, there is the option of adoption.
Good article/posting, well done. Good comments. The questions must be asked. It brings to mind a story that I saw on CNN’s home page online a few months ago, that has some scary implications for disabled people and “harvesting” organs “shortly after death”. (And the abuse, as covered in recent years, which alerted me to the issue.)
The story was about someone having surgery and kidney transplant removal:a new surgical technique allows for removal thru the vagina rather than from an incision on the outside of the body. You can guess my thought:
some woman, somewhere, disabled, may have her kidney(s) “harvested” and the scars won’t be visible on the outside…so who would know?
This seems to be a better written article on the topic.
http://www.citynews.ca/news/news_33574.aspx
They’re willing to call the apnea for what it is, and the doctor interviewed sounds (from what I can tell, I am no expert) more realistic about the effects of Kaylee’s disability. From the father’s comments, it doesn’t sound like this is a case of a parent fearing his child having “a disability” so I have to wonder what is really going on.
From what I can tell, Kaylee is no longer considered a transplant candidate at this point and is going home (again.) I will be curious to see, once the media blitz dies down, what happens to her.
Since Kaylee is not dying it is not ethical to even consider removing her hear or any of her organs.
Efforst shoudlbe made tos ecure a heart for teh child who needs one from other sources.
Hi – I’ve just found your blog through Sceondhand Smoke. being manic-depressive, the right to life of disabled people is close to my heart, and I look forward to following your blog in the future – FD
Very important article covering the issues that hardly anyone else is talking about.
I think you should submit an op-ed or letter to the Globe and Mail and Toronto Star.
What also has me bewildered is why doctors are insisting that Baby Lily needs specifically a heart transplant. Everything I’ve seen about her condition, truncus arteriosus, indicates that it can be treated by a surgical procedure to restructure the heart. Granted I’ve not done an extensive search, but still you’d think that if the condition could be severe enough that corrective surgery wasn’t enough, or if the corrective surgery was often unsuccessful, there’d be more mention of heart transplants on web sites about the disorder.
It’s almost as if somebody got the idea to use this as a test case to open the door to killing disabled children so that their organs could go to “more worthy”, less disabled kids.
I think it is incredibly cruel of all of you that have suggested these poor people are trying to avoid raising a child with a disability!! Shame on you!! ADOPTION!!!! Come on… it is unlikely that any of you could even begin to imagine what torture this couple is going through right now and then to judge them like that!!
None of you have been at the hospital with them through this. You want talk facts… if you are not there to see THIS little baby girl and speak with her doctors you don’t know facts!! To call it Apnea or Joubert does not matter. The point is they have been led to believe for whatever reason, by THEIR doctors, their baby cannot survive. I think it is INCREDIBLY LOVING AND UNSELFISH OF THEM to, through their pain, try to find something good that could possibly come out of this. To make them feel like Kaylee was here for a reason and will still have a part here on earth. They sound like WONDERFUL, STRONG people. They have my FULL SUPPORT and prayers.
BTW, I am a mother of a child with disabilities. I would not ever regret one day I have shared with my child, EVER!! However, if I thought I would lose him… no, I can’t even go there because the pain in that thought is to unimaginable. I don’t know what I would do, thank God I am not them being forced to watch your baby die.
No mention was made in the press regarding Kaylee’s physical condition beyond her disability. Was she otherwise developing normally? The major news outlets seem not to have asked. Perhaps it doesn’t matter to them. If she can’t breathe without a machine, who cares about the rest of her? I suppose it doesn’t occur to any of them that she could one day win a Nobel Prize or be elected president, or be a violin tutor to a child who grows up to be a virtuoso thanks to her.
Some people might say we should look at the bright side. There was a time in history when babies who would never learn to walk had spikes driven through their heels and were left out in the wilderness for wolves to eat. These days people are nice enough to let them live and buy them wheelchairs. It seems we have not gotten there with babies who cannot breathe when they sleep. We have come a long way, but we are not there yet.
thank you
NONE of the articles you have quoted are using information from the hospital.. ALL medical information presented to the media (until a brief press release today) has been through the father of Kaylee, who was the one who brought this issue to the media in the first place.
The media has been led on a wild goose chase by a father who spends more time each day at press scrums than at his daughters bedside.
More than any medical research questions, what this story is desperately needing is a deeper look into Kaylee’s parents and why they would bring these issues to the press, not to mention undertake clearly illegal steps towards organ donorship.
One parent who posted a reply sounded very upset with other comments that suggested other options than donating this little girl’s organs. Adoption IS an option. And just because DOCTORS have told the parents the baby will die does NOT make it so. Who knows what their motives are?? My son’s doctors told us he would never smile or know us, and should be institutionalized. Thankfully, social services did NOT listen to those doctors, and let us adopt him when he was 18 months old. He is now 23 and is a happy, healthy young man. Yes he has severe physical disabilities, but he is still one of God’s most precious gifts to us. Think OUTSIDE the box. QUESTION the doctors !!! Modern day medicine in the US is becoming more and more MONEY driven. Many physicians are now measuring a person’s worth [and consequently their right to LIVE] by how much it will COST to keep them alive and well. That is NOT their call. I feel deeply for the parents, but I also feel they are receiving deceptive information that has led them to the terrible conclusion that their baby WILL die. I pray the TRUTH will be made evident to them !!!
Here’s a pretty troubling quote, from the father, as quoted in a Canwest news story “Sick infant Kaylee will stay off life support”:
While Kaylee’s parents and doctors agreed Kaylee’s condition is deteriorating, Wallace railed at the difficult decision and the dilemma they feel doctors have presented them. “After all these days and weeks and months of them telling us, hands off and let her pass away, in that sense, now them telling us we should even consider putting her back on (the) biphasic to support her breathing for a year because these babies sometimes tend to get better as they mature in age.”
The problem is not the father or parents more generally, but understanding how it is that they have been put in that situation. Is Sick Kids just reacting to the unfolding complexities of Kaylee’s condition, as our typical trust in their expertise would naturally suggest, or is there something more to be understood about both their initial prognosis that was read as “hands off and let her pass away” by the parents and the advice–which was also true 2, 6, or 12 months ago–that “these babies sometimes tend to get better as they mature in age”. To me, this is one of the most disturbing parts of this story.
Hello
I am reading so much that peopl are saying “hospital this, the hospital that”. “Why are these doctors saying this or not saying that”? So many ppl are asking this. Has anyone stopped to think that the hospital is not able to say anything as that would be breaching confidentiality? And that this medical information from the father could be exaggerated and misrepresented? Sick Kids is an internationally famous hospital with top of the line researchers and scientists. You have to remember that the information being shared is through a father and the media. There is another side to every story told. If you are not a medical professional, then you are not able to clearly comment if all your research is based upon “googling”. And to the poster who said baby Lily could have reconstructive surgery, yes she can. And it has been done effectively many times. But every case is different and she may have a more severe type of Truncus that will not allow her to grow. Most cardiac surgeries are preferrable to be done on babies at 2-6months of age. Google that 🙂
Thank you. Please do your research and compare all media statements before making claims. And also, the hospital has released a statement/article on the Globe and Mail. ITs very insightful.
I apologize for not keeping up with the comments. The week has been busier than usual.
I’ll answer a few that seem to call for a little discussion.
GrannyGrump:
In the U.S., anyway, this protocol is already being used with newborns who are dependent on ventilator assistance. I need to dig into the literature to see just how far it’s publicly gone. Also, it seems clear to me that the hospital never meant for this to be public – that was the decision of the parents. –Stephen
Anonymous #1:
The only illegal step the parents took in terms of organ donation was to try to specify an organ recipient. As far as I can tell, the rest is – if not routine – acceptable. –Stephen Drake
Anonymous #2:
Please notice that my post asked *questions* – and they deserved to be asked. I don’t know the history of this particular hospital, but there are abundant examples (you can find some searching this blog) of medical teams giving inaccurate negative information to families in an effort to get them to remove life-sustaining treatment. One of my coworkers is a young woman with spinal cord injuries whose family had to fight that kind of pressure in two different hospitals – hospitals that were *supposed* to be aiding her recovery. –Stephen Drake
I agree with GrannyGrump, this is a test case to see how far they can go. And anyone who questions motives is going to be viewed as insensitive. I’m glad I found this site, I thought I was the only one that found the situation absurd.
” From where I sit, the hospital other professionals commenting on the story have a lot of explaining to do.”Unfortunately, you seem to be sitting in the wrong place.
As was pointed out by someone with a little bit more insight than you, neither the hospital, nor the physicians treating this child, can comment because of privacy legislation. Mr. Wallace, and his PR firm, know this and have clearly taken advantage of this fact to deliver their constant and contradictory accusations and ‘updates’.
Mr. Wallace has admitted to trying to force the hospital through the media to have his daughter’s organs donated to a specific child at Sick Kids. First, it ignores basic principles of justice relating to cadaveric organ donation which specify that organs should go to the ‘best matched’ recipient, based on a number of factors. In this case, he also tried to have the hospital perform what would have been its first heart transplant after cardiac death. There is no universal transplant protocol, they are institutional. Trying to force a hospital to venture into the unknown on the fly is nothing short of foolish. The area is so controversial that the New England Journal of Medicine had special round table discussions and invited editorials after a Denver paeds hospital attempted three last year.
While it’s obvious that this has been a trying time for this baby’s family, there are quite literally several hundred other families who have kids being treated for serious conditions at that hospital who do not devote large portions of their days holding press conferences outside. Mr. Wallace has acted irresponsibly, foolishly and selfishly as every moment hospital staff spend attempting to shed light is time that could be spent caring for kids in the facility.
*I have no current affiliation with any party in this dispute*
Dear “wb”:
This instance is only the latest instance of this hospital facing charges that they’ve been less than honest with some parents. It may be great for most children, but there are real fears that the facility has a different attitude toward infants with severe disabilities.
I’d suggest reading the posting on “Schodinger’s ethics” I linked to that was written by Dick Sobsey regarding organ donation.
Just to a search of “annie farlow” for more info on past allegations against this hospital. –Stephen Drake
This is an important story and must not be left to the back or lower pages.
It has also not been sorted out. People have tried but have been too nice about it. Here’s the nutshell:
Hospitals routinely try their luck with stealing the organs of the brain ill injured or imperfect. In this case, babies. There are many very bad and hateful people working in hospitals
It was everyday practice here with Kaylee’s parents the targets. Unfortunately, the hospital misjudged their target donor. These parents weren’t the typical pushovers. Father is a bit of an independent thinker.
Father said he had met another couple in the hospital needing a heart for their kid and wanted his baby’s heart to go to that child.
He made a stink about it when the hospital said “organs go to neediest candidate blah blah.” Of course we know that isn’t true. The organs go first to cover acts of malpractice, then to the hospital’s financial donors, then to friends and family of the doctors, then to foreign buyers etc…
Yes, the media was called by the father but were at the same time unofficially OKAYED by the hospital. Otherwise the media would never have published anything. The media does not publish every story they get. They also do not come running every time someone calls them. The media does not get involved unless working for the hospital. In this case it was possible for the hospital to piggy back on the father to do damage control and accomplish some impressive deflection from their usual “hey, kid’s brain dead… why don’t you donate organs, you’ll feel better.”
The thing to be concealed was their routine everyday practice of trying their luck. Transplantation is an industry and raw materials are needed. Period.
They try their luck on babies that are even the tiniest bit brain affected. There are thousands of needless baby deaths out there. No one knows except those who get away with it. Scratch not too far and parents will come to light who say “You know, I did have my doubts…but I trusted the doctor.”
In short order the Wallaces were given everything to get them the hell out of Sick Children’s hospital along WITH their living kid disabilities and all, as in “Here, if you want the hassle of looking after this retard so much, take it…. We tried to help you…”
These parents were given the royal treatment to get them off the premises NOT because the hospital is nice and kind. Also the public had to be fooled and the father placated. He got a helicopter ride and all sorts.
Most of all he got the life of his kid saved. I would say he wanted that…
The Sick Hospital’s secret policy is to give parents the “opportunity” to rid themselves of disabled burdens while organ brokers cash in an ever greater opportunity of big bucks. It’s really uncouth.
Because Wallace per se and other parents, do not have the right to kill their kids because they are ‘so unattractive they won’t get married and go to College’ the hospital tastefully and wordlesly wink-winks and nudge-nudges, “here, we can do that for you… it’s called “organ donation.”
The lesson here is: when you have a relative with a brain issue, ask to choose the recipient for the up-for-grabs organs. My god, you’ll get service. You get the service of life. You’ll also never be allowed back but who cares, good riddance.