Update on Kaylee Wallace & Hospital for Sick Children

My apologies for the unexpected short hiatus. I had a few too many offline issues to deal with last week to get to the blog. Barring unforeseen circumstances, the next couple of weeks should be better.

First, an update on Kaylee Wallace. Thanks to the public expressions of concern over her fate and whether or not she was actually “dying,” it looks like Kaylee’s life is on a new track. Here is pretty much the last word we have, from CityNews.ca:

Kayleee Wallace, a two-month-old girl that suffers from Joubert syndrome, was given just days to live. Her mother and father decided that they would donate her heart to another infant in need, one-month-old Baby Lillian.

But when Kaylee was taken off the respirator, the little girl kept breathing – all on her own.

On Sunday, Toronto’s Hospital For Sick Children revealed she was now in stable condition and no longer a potential donor.

Her father, Jason Wallace, spoke of the emotional rollercoaster he and his wife have been on in the past few days.

Earlier in the month, Wallace alleged that the hospital pressured him into making decisions that may not have been in his daughter’s best interest.

They were led to believe Kaylee’s prognosis was hopeless because of her rare brain condition.

Wallace now says he’s content with an apology he received from the hospital and acknowledged the challenges faced by doctors.

“It may be that Joubert is such a confusing syndrome that it confused them, even the best in the world,” Wallace explained.

Readers might have noted that a press release issued by the Canadian Association for Community Living (CACL) noted a history with the Sick Children’s hospital.

That history is revealed in a post at the What Sorts of People Blog. Most of the post is devoted to a press release issued by Barbara and Timothy Farlow, tying the current situation to the death of their own daughter, Annie, in 2005. Here is an excerpt from the release, which can be read in its entirety by clicking here:

Annie Farlow (May 25- Aug 12, 2005)

Annie’s death has led us to question the policies and practices related to the care provided to infants born with certain genetic conditions related to disabilities.

Our daughter Annie had a difficult prenatal diagnosis. We wished to provide treatment and/or surgery for her, only if it was in her best interest. Otherwise, we wished for her to have a dignified death. We met with several doctors before Annie’s birth and were assured of Sickkids’ policies regarding eligibility for surgery and ethical processes.

On August 12, 2005, our daughter died within 24 hours arrival at the Hospital for Sick Children. The events which occurred during those final hours were inexplicably tragic.

  • No call was made to the ICU for an hour when Annie had a respiratory “crash”.
  • A “Do Not Resuscitate Order” was entered without informed consent.
  • Multiple violations in the procurement and documentation of narcotics are acknowledged to have occurred.

For more information on Annie Farlow’s death and the frustrating fight to get answers, please check out www.anniefarlow.com. –Stephen Drake

Ron Seigel: “My Confrontation with Kevorkian’s Lawyer”

Today’s entry – an article by Ron Seigel – seems timely on the 10th anniversary of Kevorkian’s sentencing in the second-degree murder conviction for his televised “execution” of Thomas Youk. Sentencing day was also incarceration day. Kevorkian was taken from the courtroom in handcuffs. But Ron’s article doesn’t stop there. He also discusses some historical medical abuses of infants with disabilities and discusses the social factors that can drive people with disabilities to feel their lives aren’t worth living. Regular readers of this blog will appreciate just how relevant these issues are to recent events covered here.

From Ron’s bio:

Ron Seigel, a seasoned Michigan reporter who has enjoyed national circulation for many of his important articles received his Bachelor of Arts degree from the prestigious Monteith College of Wayne State University, Detroit, Michigan. His many articles have appeared in such newspapers as the Christian Science Monitor, Our Sunday Visitor, Catholic Faith and Family, The Jewish News, the Michigan Citizen, the Detroit News, the Detroit Free Press and the Detroit Legal News. Ron directed United Community Ombudsmen, an organization which assisted community residents in dealing with government institutions.

MY CONFRONTATION WITH KEVORKIAN’S LAWYER

By Ronald Seigel

September 6, 2008

Columnist Leonard Pitts of (The Miami Herald) wrote that he tells journalistic students “if you ever propound an argument, and all the other side can do is to have a tantrum, you can consider yourself the winner by default.” One might add that whenever a reporter asks question and all he gets is a tantrum, it is of utmost importance that he keep asking questions, and consider looking into a few more. I had that experience last year at a press conference Jack Kevorkian held soon after he got out of prison. The tantrum did not come Kevorkian himself, but from his usually mild mannered lawyer, Mayer Morganroth.

In the middle of one of my questions, Morganroth launched Into a tirade, suggesting he did not believe that I was really a freelance writer. He stated that he really felt I was a great imposter engaged in a conspiracy to embarrass his client. He forbade me to say anything further, in effect, preventing me from performing my function as a journalist under the first amendment.

When asking these questions, I made no personal criticisms of Kevorkian himself. My questions merely dealt with the political positions he expressed at the press conference. Since Kevorkian is now running for congress and will undoubtedly attempt to put his ideas into law, it is even more important that these questions be raised.

While Kevorkian was best known for assisting people in committing suicide, he went to jail for going further and actively performing the killing himself. During the press conference Kevorkian advocated legalizing such active killing in order to assure patients “ freedom of choice”

However, he opposed enacting laws that set up regulations or doing so. He wanted the regulations set up by groups of doctors or as he phrased it “ organized medicine” I have no such wish to attack doctors. I have a strong respect for the dedication and intelligence of the doctors I know and those I have been treated by. However, I also have deep reservations about allowing any group of people to operate without legal restraints and become a law unto themselves.

I feel definite alarm about giving people in any profession a License to kill. So during the press conference I raised some Questions about occasions where groups of doctors failed to Behave like platonic philosopher kings or Olympian gods and demonstrated some frightening prejudices. I asked about how scholars and physicians from Georgetown University wrote (New England Journal of Medicine Feb. 25th, 1999) how when doctors were presented with hypothetical cases in a survey, they were unwilling to give the same treatment to Black patients as they were to White patients, and were reluctant to give women the same treatment they were ready to provide for men. African American women came out worse of all.

I also asked how decades ago staff members in one branch of “organized medicine “ the University of Oklahoma health Science, wrote in a national medical magazine (Pediatrics Oct 1983) that they denied life saving treatment to certain babies, because they were following a pseudo mathematical formula designed to “measure” their “quality of life” among the traits determining whether a baby lives or died was their parents! Income.

The American Civil Liberties Union (ACLU) protested such hospitals practices, noting family income could often be a “ proxy for race,” and under such policies children were being allowed to die on the basis of “race and class.”

African Americans have long been concerned about neglect in hospitals. After an experience with her daughter, the late civil rights champion, Fannie Lou Hammer, spoke out against denial of hospital treatment as passionately as she did about denial of voting rights. After my confrontation with Kevorkian’s lawyer, an African American woman told me, “People have to watch out for those who want to disconnect their love ones life supports.” When Kevorkian’s attorney was smearing me, he may have been consciously meant to cover up abuse in medicine. He may have been lashing out because of the unconscious fear that I was opening the door to questions he was psychologically unable to face about the movement that he identified himself with.

Questions might have come up about prejudices doctors have shown against patients with disabilities of all races. Years ago Sondra Diamond wrote about how doctors were reluctant to treat her when she was caught in a fire. Because she was largely paralyzed from birth, the doctors assumed she was incapable of living a “normal life.” Her parents insisted she receive the same routine treatment as other burn patients. She survived and lead a normal enough life to graduate from college, and become an educational consultant.

Tommy Meadows, a former chair of the Detroit City Council Task Force on Disabilities said one doctor was reluctant to treat his wife, Shereian, because he did not like the way she looked. Then the doctor doubted she was worth keeping alive, because he considered her “deformed.” It might have also came out that the distinguished American Medical Association (AMA), which is close as anything in This country to organized medicine, wanted to sacrifice Kevorkian’s scared principle of freedom of choice for those who want to live.

In a 1996 resolution, AMA members declared they wanted to “accommodate” doctors, who wished to deny life saving treatment, when they believed a patient did not have a “worth-the-effort” quality of life. In such cases, the AMA advocated giving hospital appointed ethical boards the power to overrule patients and their families.

They advocated board members determine the value of a patient’s Life by “ subjective values.” There is one word for “subjective value” And this is prejudice. AMA style ethical boards could make this a far more dangerous world for victims of prejudice, whether those with disabilities, African Americans and women, particularly those like Shereian Meadows, who may fail to live up to their “subjective” standards of beauty. One wonder who would be safe.

Tommy Meadows noted, “Today we’re fighting for us. Tomorrow we may be fighting for you. If you don’t stand with us today, who Will stand with you tomorrow? This raises a more fundamental question. If prominent figures in organized medicine are willing to disregard patient choices in regard to saving their lives, how can we trust them to respect patients freedom of choice when they are allowed to make the rules for active killing?

This might give rise to an ultimate question on the nature of the so-called “rights to die” movement. I patients wishes can be set aside so easily, might not “freedom of choice” simply be a code word for getting rid of lives that some do not want around? How far is this talk of “quality of life” an attempt to subvert the principle on which this nation was founded that all men are created equal? Is this an attempt to replace this with a doctrine that there are some inferior quality second and third class, Grade, B, C, and D lives that is all right to destroy?

How far are attempts to whittle away the long held safeguards that protects human life sabotaging our guarantees of equal protection of the law? For the past decade I and other disability rights advocates have been trying to head off the AMA’s master plan by working for a passage of a law making involuntary active and involuntary passive euthanasia hate crimes, when committed by health care institutions or providers receiving federal funds and done because of disability, race, religion, ethnicity, gender or sexual orientation. It would also define as hate crimes acts of brutality and cruelty in hospitals and nursing homes. The Bill is called the Shereian Meadows Amendment.

Those journalists who are allowed to attend Kevorkian’s press Conferences might well ask him how he stands on this issue of freedom of choice. Readers might want to write or e-mail their Senator, or Representatives, and ask the same. One hopes we will also ask ourselves the most important question of all. Is this arrogant elitism in our institutions of healing a symptom of malady in our society? The late Rosa Parks said before her death that we must “respect and care for each other” if we are to “live and be free.” Do we all receive respect and caring?

Certainly most of us do not have to convince special ethical boards of value of our lives. However we do have to struggle for acceptance, whether in school playgrounds, teen-age cliques, in getting and keeping a job, “Keeping up with the Joneses,” or maintaining our dignity in old age homes. Some find it difficult to gain acceptance in their own families.

Often we feel the only way we can gain acceptance and respect is by putting others down. In such atmosphere, is it not easy to discount the worth of others, and see their lives expendable? In such an atmosphere, some come to reject themselves and feel that their own lives are worthless. How many of the “voluntary” suicides Kevorkian talks about might caused less by the physical pain or suffering of illness than by the emotional pain and suffering of society’s rejection, and self-rejection?

Note: this was originally published on a site named newswithviews.com – Ron cannot get a Michigan newspaper to accept an article about Kevorkian from. Evidently, having reporters ask hard questions at a Kevorkian press party is considered to be in pretty poor taste and the papers don’t want to encourage the practice. –Stephen Drake

I’m Doing the Fun*Run to Support ADAPT and Disability Rights

On April 26th, ADAPT will be holding its annual Fun*Run in Upper Senate Park in Washington, DC. I won’t be going to the national action or at Upper Senate Park, but I have signed up to do ten laps around a large block in my neighborhood on that day.

For readers of this blog unfamiliar with ADAPT, here’s a brief overview (copied and edited from ADAPT site):

For over 25 years, ADAPT has been a leader in the fight for accessible public transportation, the redirection of public funds from nursing homes and institutions to community-based services, and for a national personal assistance policy based on functional need, not diagnosis.

ADAPT strategies include using civil disobedience as a tool to garner public attention and effect needed change in the laws, policies, and services affecting persons with disabilities. While members of ADAPT are willing to sit at the table to change policy, we are not afraid to go to jail—if that’s what it takes for change to occur.

Direct Action works and is a necessary technique for making positive change for communities that are marginalized by discrimination and pity. Chaining ourselves to buses resulted in accessibility in city transportation. Due to ADAPT’s earliest efforts, Denver had 100% accessible mass transit prior to the passage of the 1990 Americans with Disabilities Act. The same is true in other cities where citizens used direct action to demand equality.

ADAPT’s demonstrations, protests and marches have had a significant impact on the redistribution of Medicaid dollars in long-term care. Just 10 years ago, more than 80% of long-term care dollars went to nursing homes. Today it’s less than 70%, which has resulted in great numbers of people with disabilities being freed from institutional settings. It is time to assure that ALL our brothers and sisters have that same opportunity for freedom.

About sponsoring me for the Fun*Run:

Please go to the following link, which will allow you to pledge an amount per lap or pledge a flat amount.

And, in case you are wondering, your sponsorship will benefit Not Dead Yet. Details are at my sponsorship site. –Stephen Drake

PS — If you’re making a pledge, keep in mind that I have committed to do TEN laps. That is the number you should use to figure your pledge if you want to pledge per lap.

Canadian Association for Community Living: Press Release on Kaylee Wallace

Today, the Canadian Association for Community Living (CACL) issued a press release regarding Kaylee Wallace and the issues that have come to light in the past couple of days – issues that impact countless other Canadians with disabilities and their families.

FOR IMMEDIATE RELEASE

April 9, 2009

Family’s Heartbreaking Plight Sheds Light on Deeper Issues

From Day One it’s been all about what Kaylee Wallace won’t do. She won’t go to school, she won’t walk, she won’t live a typical life. One of the first suggestions was not to feed her. It seems there has been very little about what she might do, what she could become and that her life, while following a different path, could be just as fulfilling, just as wonderful and just as valued as any other. The take away message has been that a life with a disability is a fate worse than death.

The Wallace family, and many that have come before them, have found themselves in a heartbreaking predicament. They are told by medical professionals and experts that their daughter’s life is in immediate peril. That efforts to support her are futile, that the family should leave her be and let her die with dignity. Families, under pressure, often sleep-deprived and in the throes of emotional trauma rely on their trusted doctors to provide them with unbiased information. They rely on their doctors to treat their children, not just with dignity and respect, but to treat their medical conditions. Life-and-death medical decisions are being made on a particular perspective of quality of life. If your child is not expected to follow a particular path perceived by others as typical development then the quality of their life is brought into question.

As a family-based, national association which advocates for people with intellectual disabilities and their families, the Canadian Association for Community Living is concerned that this tragic situation is another example of a child’s treatment being defined and determined by disability. Joubert Syndrome is not described as a terminal illness. The breathing difficulties often associated with the Syndrome are more commonly known as apnea which is a highly manageable condition – one that most people with Joubert Syndrome outgrow. It is hard to get an accurate account of the specifics with Baby Kaylee. Joubert Syndrome, as with many disabilities, doesn’t not have one predictable outcome. Yet, the focus of Baby Kaylee’s short life has been that imminent death was the only outcome.

The active devaluation of the lives of persons with disabilities is a disturbing trend. Misinformation about disability is a real concern for individuals and families who live with disability. The lack of public discussion about the impact of devaluation makes people with disabilities and their families extremely vulnerable. The perception that a life with a disability is not worth living is perpetuated in the media interest surrounding the Wallace family and other similar stories. The increased demand for prenatal testing and the pressure prospective parents experience to terminate when an “anomaly” is detected risks leading us down a dangerous road reminiscent of our eugenic past.

Baby Kaylee may not survive. If that heartbreaking outcome is to be her reality it should not be because she hasn’t received all of the treatments and health supports she deserves.

– 30 –

For more information contact Anna MacQuarrie 416-602-3015

The Canadian Association for Community Living is a national association of 40,000 members, 400 local and thirteen provincial and territorial associations for community living, working to promote and achieve the full inclusion of people with intellectual disabilities in all aspects of community life.

Contact Information:

Canadian Association for Community Living
Kinsmen Building, York University
4700 Keele Street
Toronto, ON M3J 1P3
Tel.: 416-661-9611 ext 204
Fax: 416-661-5701
Website: www.cacl.ca

I have nothing to add to this but except thanks to the advocates at CACL. –Stephen Drake

Kaylee Wallace – Disturbing Coverage and Unasked Questions

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