Dylan Walborn IN MEMORIAL

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Comment by C. Eckstein, CHN

IN MEMORIAL Dylan Walborn,  2000 - 2005 by Bob Enyart

Footnote: Regarding use of 'passive euthanasia' and other terms in Bob Enyart's article.

The ethics of letting go By Kevin Simpson Denver Post Staff Writer

A MOTHER S EMBRACE  By Kevin Simpson Denver Post Staff Writer  "While acknowledging the debate over the death of Terri Schiavo, and the beliefs of many that all life should be sustained under any circumstances, (Dr) Mokrohisky said he hoped Dylan's story would help the public understand a process he believes is, at times, the ethical course."

Series stories

Dylan Must Die by Vincent, Stephen   Dr. William J. Burke, professor in neurology at St. Louis University Health Sciences Center, said that eight states besides Colorado have "best interest" laws that allow guardians to render their own judgment about removing feeding tubes for incompetent patients. He called such laws "a major new step in the euthanasia movement. You can be killed by dehydration even if you never indicated you wanted to die in this way "Something I am continually amazed about is the fact that most people do not realize how painful it is to be dehydrated to death. Hasn't anyone ever been thirsty or hungry? The starvation/dehydration procedure is really torturing a person to death."  The author of Dylan Must Die, calls Dylan's family the "Modern Macbeths" - he asks the question we all ask - Why? 

•  Comment by C. Eckstein, CHN

On the 14th day of being dehydrated and starved Terri Schiavo died, March 31, 2005. The whole world knew about Terri, and people were praying, hoping for a miracle that would stop doctors from removing her feeding tube.  That same year Dylan Walborn, Broomfield, Colorado, “was a victim of America’s “mercy-killing,” euthanasia movement. Judged better off dead by Denver’s Children’s Hospital, Porter Hospice, a Denver social worker, Dylan's public school teachers, and the Denver Post, four-year-old Dylan was starved to death over a period of twenty-four days.” Somehow, before he died, we didn’t hear about this child. In fact, few people know about Dylan. Unlike Terri Schiavo, his story never made national news.  Like Terri, Dylan was not dying, he was not terminally ill. Two innocent defenseless human beings, legally murdered, and it’s called a compassion act!  Merciful!   Dylan's death can never be accurately called passive euthanasia as defined in one article.  Dylan's death was a homicide, yet no one was nor ever will be charged with his murder.  He suffered a tormented cruel slow death..

In 1983,  Daniel Callahan, then director of the Hastings Center, wrote that "...a denial of nutrition, may, in the long run, become the only effective way to make certain that a large number of biologically tenacious patients actually die."  Tenacious - indeed does seem to fit the description of Dylan.  We can say, Dylan tenaciously clung to life, unyielding to death for 24 days.

Dr. Timothy E. Quill of University of Rochester Medical Center holds that patients who have their feeding tube removed do not suffer at all. Making it sound very simple he says “they gradually fall into a coma and die when their kidneys and other organs shut down.” Before feeding tubes where invented 50 years ago, Quill said, most people stopped eating and drinking at the end of their lives. “Dying in this way can be a natural, humane process.”

Dr. Stefan Mokrohisky, chair of the ethics committee at Denver's Children's Hospital says, "I guess you could say that even the medical intervention to provide the nutrition is no longer a benefit when compared with the burden of current existence."’

Was he a burden to his mother and father?  Is that why they made him die? 

  Neurologist Dr. William Burke says this is the first American child he can think of that has been killed like this, and that we need to fight back.

In true mercy and compassion, please God, may not another child be starved and dehydrated to death like Dylan

Dylan Riley Walborn Dec. 3, 2000 - Nov 16, 2005

Cheryl Eckstein

•  IN MEMORIAL
  Dylan Walborn, 2000 - 2005

Little Dylan Walborn, Broomfield, Colorado, was a victim of America’s “mercy-killing,” euthanasia movement.  Judged better off dead by Denver’s Children’s Hospital, Porter Hospice, a Denver social worker, Dylan's public school teachers, and the Denver Post, four-year-old Dylan was starved to death over a period of twenty-four days.

The eight-page Denver Post article, by reporter Kevin Simpson who witnessed the lengthy process, gave various justifications and reasons for starving Dylan: he had cerebral palsy; he had a few seizures a day some as long as forty minutes; he had more bad days than good days.  Morally, it is justifiable to allow a dying person to die; it is wrong to starve to death someone who is not dying.  Unlike animals, God made man in His image; and in addition to prohibiting murder by “the law written in their hearts, their conscience” (Rom. 2:15), God also explicitly commanded in Scripture “do not kill the innocent” (Ex. 23:7; Ps. 94:21; etc.) who are not convicted of a capital crime.

The Denver Post article never identified the specific criteria which convinced them that this family could justifiably deny food to Dylan and starve him to death.  Obviously, the reporter and the parents (along with relatives and friends, subsequent Post letter writers, Children’s Hospital, etc.) were convinced (though wrongly) by some combination of Dylan’s particulars that it was morally acceptable to stop feeding him.  The Post reported that “national experts on child hospice and palliative care point to a million kids in the United States who live with a serious chronic or life- threatening condition,” any number of which now are obvious candidates for consideration for starvation.  And Children’s Hospital’s ethics committee considers starvation for “five [children] each year,” whereas “more than half the time - doctors allow death to occur [starvation] without such consultation.”  As Simpson wrote in his own words, “In Colorado, more than 4,000 families have a child with a life-limiting illness… and any of them could ultimately face a choice between prolonging life and ending it.”  Thus, America’s child euthanasia stage has emerged.  Yet the Denver Post did not identify exactly which conditions supposedly justified this intentional starvation; therefore, this table lists all the negative descriptions of Dylan documented there, in order of their appearance in the article.

As you read these conditions, notice that none could justify intentionally starving anyone.  Of course, losing Dylan to complications from cerebral palsy would be sad, but of course, not immoral; however this boy did not die from cerebral palsy, he died from being starved:

On Euthanasia

Here we define euthanasia and its stages, showing where Dylan’s death fits in; and reminds the world of the euthanizing of 200,000 Germans, which practice prepared Germany for the slaughter of millions of Jews.

Euthanasia is the “mercy” killing of a human being, whether active or passive and ranging from voluntary to In Dylan Walborn’s story... [more]

more....continued

On Euthanasia

Where Dylan Fits In

Euthanasia is the “mercy” killing of a human being, whether active or passive and ranging from voluntary to involuntary.  In Dylan Walborn’s story, Denver Post reporter Kevin Simpson wrote in his own words that the parents of 4,000 Colorado children could face “a choice between prolonging life and ending it.”  People “passively euthanize” others most commonly by withholding food or water.  Those who advocate euthanasia attempt to blur the distinction between food and water, which everyone needs to live, and intense medical treatments such as mechanical replacement of failed vital organs.  It is okay to let a dying person die, it is not okay to kill them.  Some Denver Post readers, including those who reject absolutes and even Christians with little scriptural understanding, will suppose that a lethal injection would have been even better treatment of Dylan, killing him painlessly and instantly to avoid his weeks of starvation.  The British Broadcasting Corporation reports that, “Some (mostly philosophers) go even further and say that active euthanasia is morally better because it can be quicker and cleaner, and it may be less painful for the patient.”  The BBC also reported on an interview with the French minister of health, who was also a founder of Doctors Without Borders, who admitted to committing active, non-voluntary euthanasia, but this report was not to criticize him, but used to justify Holland’s legalization of euthanasia.  Killing people who request starvation or lethal injection is called "voluntary euthanasia,” (as is now done in Switzerland); killing babies (as is now done in Holland) and others unable to make decisions (like Dylan) is called “non-voluntary;” and killing the weak and vulnerable against their wishes for their good (or sometimes the good of society, duty to die, etc.) is called “involuntary euthanasia.”  By these popular descriptions, the starvation of Dylan was passive, non-voluntary euthanasia.  By God’s command, starving Dylan equals intentionally killing an innocent child.

Germany's Euthanasia Experience

As World War II raged, Germany used some of its dwindling resources to produce a major motion picture, “I Accuse,” which premiered in Rome, about a doctor who tried everything to cure his suffering wife, and then, out of the purest love and mercy, he finally killed her.  The National Socialists (NAZIs) prioritized survival of the fittest, and became obsessed with a defense of euthanasia as merciful.  NAZI obsession with euthanasia does not prove it right or wrong, but shows that the its defenders do not automatically deserved the moral high ground as given them by the media.  Rather, the German case shows that grand claims of humanitarian mercy can camouflage hideous deeds.  The Germans acted secretly, by their own admission, in an effort to hide the euthanasia from the Church and the Americans, which the Germans believed would oppose the practice.  Today, the American Church has crossed the line, and has begun to actively support and participate in euthanasia.

After the fall of the Berlin Wall, researchers could access millions of pages of previously unavailable documentation.  The following comes from April 3, 1940, when the mayors of Germany met for a conference in Berlin. The mayor of Munich presided.  His name was Karl Fiehler.  We still have the minutes of this meeting.  Fiehler’s meeting informed all the mayors present of a plan to empty hospital beds, by killing the patients.  The only responsibility of each mayor in all of this was simply to deal with the ashes of the hospital patients.  Initially, the plan was to kill the mentally and physically handicapped.  Over the next five years, town cemeteries took delivery of tens of thousands of urns.  On the volume of urns so delivered, see Dr. Richard Schäfer’s testimony in the Nuremberg Documents, No. 3817.  Urns were processed under direction of the mayors.  These urns, filled with the cremated remains of sick or disabled German citizens, were stored away from public view.

Quoting from the actual minutes of the meeting:

German conference of mayors in Berlin…

In the many mental institutions in the Reich there are an infinite number of incurably ill patients of all kinds who are completely useless to humanity;  in fact, they are nothing but a burden, their care creates endless expense, and there is no possibility that these people will ever become healthy or useful members of human society.  They vegetate like animals, and are antisocial people unworthy of living…  They only take nourishment away from other, healthy people, and often need two to three times as much care.  Other people must be protected from these people.

…we must… eliminate these beings, even if only to better maintain curable patients in mental hospitals…

It is difficult above all because of the church…  It is also dangerous because of the Americans, who could enter the war against us for such a reason.

Recalling that these German mayors met on April 3rd, at Denver Bible Church, on April 3, 2005, we remembered the 65th anniversary of this date and vowed to warn others about the process that led Germans by the thousands to slaughter the innocent by the millions.  You can listen to that sermon here, which was delivered three days after Terri Schiavo was euthanized.

[Concerning the remains, inform family members that] the urn will be sent to the nearest cemetery office free of charge for temporary storage.

When such urns are sent to the cemetery offices, the cemetery office must keep no files on them.

The practical procedure at the cemetery should occur as follows:  One fine day, a package will arrive at the cemetery…

For documentation on the minutes of this mayors meeting, please see Chapter Two of Cleansing the Fatherland by Gotz Aly, et al., from John Hopkins University Press, 1994.  The authors claim those minutes referenced are available in the Plauen City Archives, Germany.

God expects the Body of Christ to lead in teaching the public about His prohibition against killing the innocent, and to provide leadership to governing authorities.  Yet, our seminaries have become weak regarding the teaching of Scripture and the basics of morality.  Those ignorant of history will repeat its failures, and lacking wisdom, average people become cavalier about killing the innocent.

As best we know, the mayors of all the towns in Germany went along with all this, and with much more.  And these mayors were not handpicked by the NAZIs.  They didn’t interview candidates for town mayors and asked them, “Would you mind if eventually, we killed all the handicapped kids in your town?”  They didn’t do that.  Normal people, eager to get ahead in their careers, went along with this.  That self interest made them eager to support their government regardless of what it asked of them.  The Germans did not handpick hundreds of cemetery directors, and thousands of cemetery workers, they did not handpick all the asylum directors.  Back then Germany had a couple hundred asylums for the handicapped and homes for disabled children.  Thousands of directors, doctors and nurses knew about the slaughter of their patients.  Were they all specially handpicked, with those opposed to euthanasia fired?  No!  Many of these participants had been in those careers and jobs long before the NAZIs came to power.  A book from the 1890s, Quality of Life, convinced Germany’s medical community of the benefits of “mercy” killing.  The thousands who killed 200,000 vulnerable Arians (Germans) were members in good standing of a humanist medical community which turned its back on God’s morality.  Out of hundreds of asylum directors, only one resisted.  Heinrich Hermann managed the home for “deaf-mutes” near Ravensburg.  In fact, we still have a letter Hermann wrote just four months after the mayors meeting.  He dated this letter to his boss August 6, 1940.  Hermann wrote:

I know the aim of this planned registration…  I am simply convinced that the authorities are doing wrong by killing certain patients… by exterminating such a patient, or a member of the family or the asylum who is simply abnormal, we are acting against God’s will.  That is the reason I cannot go along with this.  I am sorry, but we must obey God more than human beings.  I am prepared to accept the consequences of my disobedience.  -Heinrich Hermann

Hermann was rare; a German hero who resisted the euthanasia program, and Denver Bible Church honors him.  But virtually all other such German officials simply switched their allegiances, from following a bland bureaucratic evil to a brazen bureaucratic evil, and became willing to kill the innocent.  For example, the final note of the April 3rd mayors meeting says:

Questions should be addressed to Herr Deputy Dr. Georg Schlüter at the national association of mayors in Berlin.

Dr. Schlüter headed the association’s department for social policy.  That is interesting because Shlüter had been the head of Department III, Social Policy, for many years, from long before the NAZIs took power, from back in the days of the democratic Weimar Republic.  The NAZIs did not handpick those who slaughtered 200,000 innocent people (in preparation for the holocaust).  The pro-euthanasia culture of the day picked them.  When the doctors and the politicians began to accept euthanasia, killing innocent people to solve problems, that significantly prepared the way for the German slaughter of the Jews.  All the right kinds of people were in place.

America's Culture of Death

The Journal of the American Medical Association, in 1988 published the anonymous report of a physician who gave a lethal injection to a young cancer patient, whom he had just come across during a night shift.  Yet without condemnation, the JAMA editors published this murderers report.  In May of 1996, the New England Journal of Medicine reported that twenty percent of nurses admit to hastening the deaths of terminal patients, many of these as non-voluntary killings.  Thus, many Americans have followed elderly Hollanders who fear being euthanized.  In only three years the Dutch slid down the slippery slope from voluntary to non-voluntary euthanasia, when the BBC reported in April 2001: “Netherlands [became] the first country in the world to allow so-called mercy killing,” when “the patient must... have given consent,“  to their Dec. 2004 report in which “the main Dutch doctors' association KNMG urged the Health Ministry to create an independent board to review euthanasia cases for terminally ill people ‘with no free will,’ including children.” In fact, “a hospital in the Netherlands...has already begun carrying out such procedures," and "proposed guidelines for mercy killings of terminally ill newborns…”  Of course this was similar to the Denver’s Children’s Hospital, the Denver Post, and others who have de facto legitimized euthanizing even children.  So now, as in Holland, where reportedly many elderly carry cards that say “Don’t euthanize me,” many Americans are becoming fearful of being euthanized.

America's elite defends two infamous heroes of the pro-choice (abortion and euthanasia) movement, Jack Kevorkian and Margaret Sanger.  Yet Sanger, founder and long-time president of Planned Parenthood, wrote in her book Pivot of Civilization (p. 112) regarding “the blind, deaf and mute… and epileptic…  [that] our eyes should be opened to the terrific cost to the community of this Dead weight of human waste.”  Yet Planned Parenthood still gives out their annual Margaret Sanger Award, even though she also wrote in Woman and the New Race (p. 63), of infanticide that, “The most merciful thing that the large family does to one of its infant members is to kill it.” And Jack Kevorkian, living in prison primarily for committing voluntary euthanasia, also committed involuntary euthanasia as documented in his own handwritten, bedside notes as one young man he killed indicated three times that he wanted to change his mind, and not go through with his own assisted suicide (murder), such that Kevorkian twice stopped the procedure, but when the man a third time changed his mind, Kevorkian proceeded regardless, and committed involuntary euthanasia.  The euthanasia movement overlooks such a detail in their praise of Kevorkian, which itself provides evidence of the evil nature and the slippery slope of euthanasia.

On Sunday, Nov. 2, 1997, the New York Times ran a three-page article advocating legalizing the killing of babies, including healthy babies, in early stages of infancy (i.e., after birth), and talk show host Bob Enyart read that article to a live TV audience in 80 cities.  While the New York Times later silently removed that article from their print and online archives, it was preserved by many people online, was editorialized against the by the Rocky Mountain News (Dec. 7, 1997, The Road to Infanticide), and here you can read our own unauthorized archive of the Times article.  And in a grotesque example of how popular such ideas can become, scientist Sarah Hrdy, studying the Lemurs of Abu (monkeys in India) became convinced of the usefulness of infanticide and wrote in Discover Magazine of all places, on The Evolution of Infanticide that “Infanticide is at one end of the spectrum of parental care.”  Thus, Denver Bible Church issues a warning to Christians that we must stand resolute against abortion and euthanasia, for this culture of death mocks God and destroys the innocent at our peril.

Return to DylanWalborn.com (which is sponsored by KGOV.com).

For more information on Germany's horrible experiment with widespread euthanasia, please read Cleansing the Fatherland by Gotz Aly, et al., published by John Hopkins University Press, 1994; and The German Euthanasia Program, by a former "senior psychiatrist for the New York City Department of Hospitals," Fredrick Werthem.

On the Matter of Food

One common form of "mercy" killing is by starvation.  Denver Post reporter Kevin Simpson wrote that 4,000 Colorado families could "face a choice between prolonging [the] life [of a diseased or disabled child] and ending it.”  The euthanasia movement attempts to blur the distinction between food and water, and sophisticated medical treatment, and thus sometimes refers to starvation as "cessation of treatment."  Since all human beings require food and water for survival, these draw a clear line of delineation between dying, and killing.  Little Dylan clung to life through 24 days of starvation; many healthy children so starved would have died sooner. 

Then He will also say to those on the left hand, "...I was hungry and you gave Me no food; I was thirsty and you gave Me no drink…"  Then they also will answer Him, saying, "Lord, when did we see You hungry or thirsty... and did not minister to You?" Then He will answer them, saying, "Assuredly, I say to you, inasmuch as you did not do it to one of the least of these, you did not do it to Me."
-Jesus, Matthew 25:41-45

Scripture repeatedly teaches man's obligation to feed the hungry.  See also James 2:15-16; Acts 20:35; Mat. 25:35; Luke 3:11; [14:13]; Rom. 12:20; Ezek. 18:7; and Isa. 58:7 (which includes your "own family"). The Left often reverse God's principles of righteousness.  Leftists (liberals, etc.) support the killing of the unborn baby of a rapist, yet will oppose execution for him, thus protecting the guilty, and killing the innocent. Likewise with food, through the Apostle Paul, God commanded that we should NOT feed those who refuse to work (like homeless drug addicts), for hunger is God's merciful mechanism for overcoming laziness and drunkenness.  For, "we commanded you this: If anyone will not work, neither shall he eat" (2 Thes. 3:10).  Yet liberals and unwise Christians will feed those who "will not work," and deny food to those who cannot feed themselves, thus destroying both groups, the lazy through food, and the helpless through starvation.

Active euthanasia (suffocating Dylan or giving him a lethal injection) would be a sin of commission (doing wrong), and starving him, because of its intent as "mercy killing," in reality is also a sin of commission (intentional killing).  However, for those who disagree or can't understand this, realize that the Bible also condemns sins of omission (not doing a necessary good), as an apostle James wrote:

 Therefore, to him who knows to do good and does not do it, to him it is sin.  -James 4:17

Feeding handicapped children is a necessary good, for Jesus takes it personally when you do not do so to the little ones.  Pastor Conn should have provided these simple principles, and shared such scriptures, with his congregant, Dylan's grandma Vicki Saiz.  Eleven days into Dylan's starvation, his mother pressed "her mother for a clarification: Does she support what they're doing or not?  And grandma said, "I guess ... I just don't understand."  And this, after supporting the "mercy" killing of her grandson.  Very possibly, this grandmother would have understood the most simple counsel and Bible teaching from Victory Church against euthanasia, had it been offered her.  Instead, she relied on a superstition, that Dylan "would not live past age 5. God told her, she says."  Tragic.  In the absence of solid Bible teaching, even on the most crucial matters of life and death, Christians become superstitious.

Of course, it is morally justified to allow a dying person to die.  That is, when disease or injury has so harmed someone's body that food alone cannot keep the person alive, but mechanical replacement of vital organs is needed to keep blood pumping through a virtual corpse, then of course it is morally justified to allow a dying person to die. But it is immoral to kill someone who is not dying.  And Dylan was disabled, but not dying, otherwise his parents could have avoided the emotional trauma of ending his life by the "mercy" killing of starvation.  Therefore, Christians must teach the world the difference between allowing a dying person to die, and killing the innocent, whether by suffocation, starvation, or lethal injection.

Regarding the Denver Post Reporting of Pastor Buddy Conn Supporting Dylan's Mercy Killing

After a lengthy face-to-face meeting with Pastor Conn and his senior pastor, Michael Ware of Colorado's Victory Church, I am convinced that Pastor Conn was COMPLETELY UNAWARE OF, and DID NOT support the parents' decision to stop feeding their son.  I APOLOGIZE to Pastor Conn and Pastor Ware, and to their church members, for not contacting Buddy prior to accepting the story in the Denver Post as factual.  The Post reporter Kevin Simpson will not answer our questions regarding Buddy Conn's total repudiation of Simpson's portrayal of him as aware and supportive of the decision to stop feeding Dylan.   Pastor Ware has committed to making an effort to correct the false public record as established by the Denver Post, and hopes to soon publicly publish a corrected account, hopefully, in a Denver Post letter to the editor.  There is more to say on this, and so this section will be updated January 11th, 2006.  For now, again, I reiterate, I should have contacted Pastor Conn initially, and for not doing so, I am sorry.
-Pastor Bob Enyart of Denver Bible Church

Listen to these Bob Enyart Live MP3 radio shows about Dylan from KGOV.com:

Parents Starve to Death Four-year-old Dylan
Fri. 12-23-05 #255 or better at 56kbps

Denver Paramedic OK with Killing Dylan
Tue. 12-27-05 #257 or better at 56kbps

Denver Nurse Trumps Denver Paramedic re: Killing
Wed. 12-28-05 #258 or better at 56kbps

Denver Christian Nurse on End-of-Life Issues
Thu. 12-29-05 #259 or better at 56kbps

• SOURCE  IN MEMORIAL DYLAN WALBRORN

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Footnote: I respectfully disagree with  Bob Enyart definitions of euthanasia given in his "In Memorial"  There is much debate regarding use of the term passive euthanasia.   The Canadian Medical Assoc., (CMA)., defines "passive euthanasia as allowing a patient to die by withholding treatment, while active euthanasia is defined as taking measures that directly cause a patient’s death.  Passive euthanasia is morally permissible in certain circumstances while active euthanasia is always wrong. Active euthanasia is doing something that kills them."  For example, every patient has the right to refuse medical treatment, even if the treatment would benefit their life.  Therefore passive euthanasia is sometimes used when withdrawing medical treatment and allowing nature to take its course. The term is often used incorrectly and confuses readers. It is hoped the term will eventually phase out and become obsolete - the sooner the better.  It would be more accurate to use the terms withholding futile treatment and withdrawing futile treatment instead of the term passive euthanasia. Having said that, if withholding treatment and withdrawing futile treatment is taken to hasten the death - to make someone die, that is murder .  In Dylan's case, the so-called futile treatment was food and water.  Dylan and Terri were legally murdered.

 I find the following definitions listed by Lars Johan Materstvedt, et. al., to be more accurate: 

 Many definitions of euthanasia and physician-assisted suicide have been formulated. None of the following should be seen as euthanasia within the definitions used here:

 . withholding futile treatment;

 . withdrawing futile treatment;

.`terminal sedation’ (the use of sedative medication to relieve intolerable suffering in the last days of life).

Medicalized killing of a person without the person’s consent, whether nonvoluntary (where the person is unable to consent) or involuntary (against the person’s will), is not euthanasia: it is murder. Hence, euthanasia can be voluntary only. ... Accordingly, the frequently used expression `voluntary euthanasia’ should be abandoned since it by logical implication, and incorrectly, suggests that there are forms of euthanasia that are not voluntary. In the literature, as well as in the public debate, a distinction is sometimes drawn between so-called `active’ and `passive’ euthanasia. It is our view that this distinction is inappropriate. On our interpretation, as well as according to the Dutch understanding. ..euthanasia is active by definition and so `passive’ euthanasia is a contradiction in terms - in other words, there can be no such thing. Adoption of the following definitions is recommended. Euthanasia is killing on request and is defined as

 A doctor intentionally killing a person by the administration of drugs, at that person’s voluntary and competent request.

Physician-assisted suicide is defined as A doctor intentionally helping a person to commit suicide by providing drugs for self-administration, at that person’s voluntary and competent request. (Emphasis in bold mine)

SOURCE: Palliative Medicine 2003; 17: 97 /101  Medicalized killing, withholding/withdrawing futile treatment and `terminal sedation’

•  A MOTHER S EMBRACE:

Kerri Bruning, 35, holds her 4-year-old son, Dylan, on... (Post / Andy Cross)

Dave Walborn lifted his son upright, all 32 pounds of him, slipped one hand behind his lolling head and gazed into the open but vacant blue eyes. He spoke out loud the words that would move him and the boy's mother, Kerri Bruning, one step closer to an excruciating decision.

"Dylan, it's OK if you want to go," he said. "I don't want you hanging on for me."

He heard no response, felt no mystical vibe. But with the sound of his own voice, Dave opened the door to a possibility:

Maybe it was time to let go.

Some combination of Dylan's strength and his parents' devotion had carried the three of them for nearly five years. An in-utero stroke brought Dylan into the world with severe cerebral palsy, the overarching term for a condition that left him virtually blind, deaf, immobile and unable to communicate or perform any voluntary function.

The neurological damage bounced him between expressions of pain or calm - but nothing his relatives, doctors or nurses could decipher as joy. He cried silent tears as seizures rattled him. He spoke only in heartbreaking body language: a furrowed brow, rigid muscles, a discolored tongue and heaving breaths that whistled and gurgled from his tracheotomy tube.

And still, he defied expectations.

Dave, now 32, and Kerri, 35, had heard predictions that he would not see his first birthday. But Dylan saw that one and three more. And though these anniversaries brought no corresponding developmental milestones - no first steps, no first words, no first anything - the parents built two loving homes for their son.

They never married. Although their engagement weeks after Dylan's birth reflected good intentions, their short romance dissolved in the difficulty of caring for a severely disabled child and they called it off. Yet they remained committed to their son, mutually respectful and supportive as caregivers.

Even as they moved apart, Dylan's life bound them.

But by the middle of his fifth year last summer, the boy's seizures had intensified. Although doctors countered by increasing his medication, the spasms repeatedly burst through the chemical buffer.

Sometimes his body would shake - from short bursts every few seconds to frightening episodes of as long as 40 minutes - three or four times a day. Energy would seem to radiate from his very core, Kerri noted, and "flop him like a rag doll." Other times, he would appear to simply shiver uncontrollably.

Dave and Kerri could try to blunt the escalating seizures with drugs that would render their son effectively comatose. Or they could withdraw life support - in Dylan's case, the nourishment delivered through a gastrointestinal tube implanted during his first month - and watch their son die.

In some ways, they faced a decision that isolated them. But in another sense, they were hardly alone.

The public battle between the parents and husband of Terri Schiavo thrust such agonizing decisions into the headlines last spring, but similar, uncontested end-of-life choices face thousands of Americans every day.

And though such cases aren't statistically tracked, national experts on child hospice and palliative care point to a million kids in the United States who live with a serious chronic or life- threatening condition.

"There are huge numbers of children and families that experience these kinds of life-and-death situations," says Ann Armstrong-Dailey, founding director and chief executive of Children's Hospice International. "It's absolutely not an unusual case."

In Colorado, more than 4,000 families have a child with a life-limiting illness, according to Medicaid statistics - and any of them could ultimately face a choice between prolonging life and ending it.

The chairman of the ethics committee at Denver's Children's Hospital, pediatrician Stefan Mokrohisky, estimates he has participated in hundreds of cases where nutrition or other life-sustaining measures were ceased over the past 20 years.

Now, it was Dave and Kerri's - and Dylan's - turn.

The decision

Dave and Kerri seek the guidance of faith and doctors who know their son.

As Dylan's seizures worsened, the two parents - for nearly five years separate but equal partners in Dylan's care - talked on the phone. Then Dave walked over to Kerri's - only about 200 yards separate their Broomfield apartments - and they talked some more.

Kerri, a restaurant worker and massage therapist, had accepted the possibility of withdrawing life support months ago, as Dylan's bad days began to outnumber his good ones. But Dave, a carpenter, had reached his turning point just weeks earlier, as he sat in his recliner watching the story of a dying child undergoing a last-ditch procedure on the TV medical drama "House."

When the young girl on television agreed to a potentially futile measure for her mother's sake, the scene hit home. Was he being selfish in clinging to his son? Would Dylan choose death over his deteriorating life?

At that point, Dave picked up Dylan and spoke the words that tipped him toward a decision.

He and Kerri asked for a meeting.

A little past 8 a.m. Oct. 18, Pastor Buddy Conn came calling at Kerri's apartment.

Together, they prayed.

Pastor Buddy, on the staff of a large non-denominational congregation, knew Kerri and Dave from previous hospital visits in which he'd prayed with them and Dylan. This time, he asked the Lord to give the parents clear understanding of what they were supposed to do later that day; he did not presume to know the answer.

He prayed for Dylan's healing - whether on earth or in heaven.

"Mom just wanted to know, 'Boy, have I fought the good fight, have I finished the race?"' the pastor says. "She felt she had. She's a believer, so she leans on God for her day-to-day guidance. I believe God gave her an answer in the afternoon."

That's when Kerri and Dave drove to Children's Hospital, where they met Dylan's neurologist, his pediatrician and two members of the institution's ethics committee.

Dylan's case was one of about five each year that come to the committee for consultation on removing nutrition. The ethics consult team considers 30 to 40 total cases annually, although bioethicist Mokrohisky notes that often - more than half the time - doctors allow death to occur without such consultation.

Dylan's doctors covered all the bases.

In a small examination room, the parents laid out their wish to end their son's suffering. The two ethics consultants, a doctor and a nurse, asked if they'd explored all known medical avenues. The neurologist explained the futility of treatment. The pediatrician described Dave and Kerri's commitment to their son as heroic.

Satisfied, the ethics committee members concurred that the hospital could support removal of life support - in this case food - as an ethical option.

The doctors left Kerri and Dave alone in the room.

They talked about a date and agreed to stop Dylan's feedings on the following Sunday. Then Dave made a suggestion: On Saturday, before medication rendered Dylan entirely unresponsive, they could gather friends and relatives to celebrate the ways that their son had touched so many lives.

* * *

The visitors come in waves - friends, cousins, aunts and uncles - to the suburban split-level house and eventually gravitate to a rocking chair in the far corner of the living room.

Dylan Walborn, resting in the arms of his grandma, Vicki Saiz, stares blankly at guests in what appears to be a state of semi-consciousness.

At intervals, the grinding hum of a suction pump clears his airway. A ceiling fan turns above, and the air currents flap the chain switch rhythmically against its hollow metal housing.

Tock, tock, tock ...

Grandma Vicki smiles.

In hosting this sad celebration at her home with husband, Don, she revels in the opportunity to hold her grandson, to share him with others, to speak to him as if he is an active participant in the conversation - and to snap a few more of the thousands of digital photos that chronicle Dylan's life. She has mastered the art of holding her camera at arm's length and snapping a perfectly framed picture of them together.

Vicki wishes her grandson could have run around and made a mess of her house. But Dylan has left his mark on her in subtle ways. He has made her more patient, more accommodating, more appreciative of life.

"I've been praying since he was born for a miracle," Vicki says. "I never got that miracle ... but then, maybe I did. He's brought me a lot of joy."

She says she has known since her grandson was 3½ that he would not live past age 5. God told her, she says. Not in a vision, not in a booming voice.

Suddenly one day, she just knew.

"Even though it's hard for us to let go, I don't want him to suffer any longer," she says. "I know because he's crying that he's hurting. It's not fair to keep him here."

Dave arrives at the house with his mother, Patricia Walborn, who just flew in from Wisconsin. She heads for the rocker that has become the focal point of the gathering, takes a seat and welcomes Dylan onto her lap.

"It's hard being so far away," she sighs.

Although she and Dave's father live in a small town north of Madison and haven't been able to visit often, it doesn't take her long to notice a difference in her grandson.

"He doesn't have the strength he had before," she observes.

In the living room, Don Saiz - Vicki's husband and Kerri's stepdad - removes a framed piece from the wall above the couch. It's a poem he wrote about Dylan, celebrating the little boy's wondrous effect on the family.

Now he's working on another piece - "kind of the farewell one" - tentatively titled "Little Big Blue Eyes."

"He may not be with us much longer, and making that part of the poem brings me to a halt," says Don, a bus driver for RTD. "I can't concentrate. It'll be awhile before I get it together."

Friends, relatives and even a group of Dylan's teachers and therapists from the school he attended all file through, sharing fond memories.

Some of Dave's buddies, preparing to leave, wander over to the rocking chair to say goodbye to Dylan. Some kiss his head gently.

Kevin Smeiles, a 40-year-old bear of a man, holds the boy's tiny hand and looks at him for a long time. Finally, he places the hand, limp, by Dylan's side. He turns and hugs Kerri, then hugs Dave, releases the embrace and immediately turns away, tears in his eyes.

"On Sunday," says Kerri, "we put him in God's hands. It's God's day."

The celebration extends into Saturday evening before Kerri and Dylan return, exhausted, to Kerri's apartment.

Emissaries

As Dylan's journey begins, the ranks of his allies and helpers swell.

In the galley kitchen of the two- bedroom flat, home nurse Vicki Bauer puts a 1-milligram tablet of Clonazepam into a red cylinder, then adds a single 100-milligram tablet of Topamax.

She twists the plastic pill crusher until they become a fine powder, dissolves the mixture into a vial containing 50 cc of water, then prepares another vial with 100 cc of water to wash the anti-seizure combination through the feeding tube.

Kneeling in the living room, she attaches the first vial to Dylan's gastrointestinal tube and watches it drain, then repeats the process with the second vial.

In Dylan's bedroom, the nurse now screws a small electric pump onto a metal pole at the foot of the boy's bed, fills a clear plastic bag with two cans of Nutren Jr., a concentrated nutritional formula, and 100 cc of water. The bag dangles from a hook at the top of the pole.

She runs the mixture through a long tube to force out the air, then snakes the tube through the pump and turns it on. Red digital numbers flash on the control panel. Dosage: 60 cc per hour.

It's a routine she has performed at least four times a week for the past seven months as Dylan's primary home nurse. And she'll continue to administer his medicine in the days ahead.

But tonight is the last feeding.

A little before 9 p.m., Kerri settles Dylan into her lap.

"Do you know how much I love you?" she whispers to her son. "I don't think you do."

The medication has kicked in, and his eyelids droop shut, but there is something his mother must do. She slides on her reading glasses and begins to read a thin, illustrated volume called, "Piggie Pie!"

"Are you ready?" she asks.

Other times, when the medication failed to knock him out, Dylan's eyes would grow large, perhaps because Kerri changed her tone and inflection for each character. Tonight, he does not stir.

Still, Kerri reads each page - cackling as the witch in search of "eight plump piggies for piggie pie," deepening her pitch for Old MacDonald the farmer, injecting a sly accent as the big, bad wolf enters the tale. No shortcuts.

The story ends the same as it always does, with the same faintly dark fairy-tale humor, and she closes the book. It's Dylan's bedtime, a ritual of the medical, practical and spiritual to see him through the night.

Kerri lays him on his twin bed and stretches a long blue tube from an electric misting machine to his tracheotomy tube, so traces of moisture will ease his breathing in the dry air. Then, for the last time, she plugs his white feeding line into his g-tube.

For the next 10 hours, the computer- controlled device the nurse prepared earlier will drip nourishment through the white conduit directly into Dylan's stomach. Once the machine shuts off automatically at 7 a.m., he will receive only water and medication.

The process has begun.

Kerri covers Dylan with a blue blanket, then drapes a knitted afghan on top.

"Are you ready to say your prayers?" she says to the sleeping boy.

She picks up an angel doll from his bedside and activates a tiny electronic voice recording inside.

Angel of God, my guardian dear,

To whom God's love commits me here,

After this day be at my side,

To light, to guard, to hold, to guide.

Kerri places the angel doll at the head of Dylan's bed.

"Amen," she says.

* * *

Michelle Cox arrives Tuesday with a gentle demeanor, a kind face and an affinity for dogs that will serve her well here.

She's a social worker with the Butterfly Program, the support service for seriously ill children offered jointly by The Children's Hospital and Porter Hospice of Centura Health. Such programs have been gathering momentum nationwide, and next spring Colorado stands to be among the first states to offer such counseling and respite care through Medicaid, starting from a child's diagnosis with a life-threatening condition.

Although these services arrive late in the process for Dylan's family, which has relied on Medicaid for most of his life, Cox still has plenty to do: augment the medical and nursing services already in place, offer guidance for burial arrangements, connections to counseling and advice on how to allow for a peaceful passing in home surroundings.

Sometimes, she'll just listen.

Cox, who has a basset hound at home, instantly establishes rapport with Kerri's dog Tyra, a whip-smart chocolate Lab who provides welcome diversion and comic relief, and the newcomer Lily. Then she turns her attention to the parents.

They talk about arranging a prescription for morphine, in anticipation of discomfort Dylan might feel the next day, which will be his fourth without food. Kerri wonders if they could also get a prescription for Valium.

"We've got some," Dave reminds her.

"No," Kerri says. "For us."

Cox understands well the anxiety that grips parents of a dying child. Carefully, she searches for a handle on the hopes and fears that swirl now in the small apartment. On this first visit, she hears tentative expressions.

"I just try to feel that every day is normal, that when he takes that last breath, that's how it's supposed to be," Kerri says. "He needs to be free and not suffer."

Dave's turn:

"I'm fighting myself every day if I'm doing the right thing," he says. "I ask myself, then I answer, then I ask again. It's the same thing every two minutes. I know we're doing the right thing. But I still ask ..."

Rarely do they acknowledge the angst of their decision. In the days ahead, Dave will embrace the distraction of movies, books and video games in the apartment and find simple relief just hanging out in a buddy's garage. Kerri will stoically plow through volumes of crosswords at home, but vent emotions and self-doubts on brief visits to her boyfriend.

Among company, both keep raw feelings below the surface.

Kerri often talks with clinical detachment about the process unfolding. Emotional moments catch in her throat, but she swallows them.

"Now, she has this wall built up," explains Lisa Adducci, her closest friend. "She might seem really detached about the decision, but deep down it bugs her. That's just how she deals with it. If I was an outsider, being there now, I'd think, 'Wow, she doesn't break down.' But she has. She just puts up that wall that she's really tough when people are around."

Later, Cox goes over care details with Nurse Vicki. She shows her a form titled "Death at Home Procedure" that will need to be faxed to the local coroner by 9 a.m. the day after Dylan dies. She leaves a pamphlet that explains the signs and symptoms that precede the death of a child.

Kerri won't look at it.

Mothering

Kerri knows every detail of Dylan's body but has to guess at what he feels.

Dylan reclines on the beanbag chair in the living room while Kerri picks out the clothes he'll wear after his morning bath.

"It's warm," she says to him. "Do you want to wear shorts today?"

The bath-time ritual usually seems to relax Dylan, except for the moments immediately after he's removed from the warm water and his body trembles slightly as he's swaddled in towels.

Now, Kerri cradles his head, careful not to let the water crest near his trach or his feeding tube. She washes him gently with a cloth.

"Leave the pains and wash them down the drain," she says in a soft sing-song.

With his naked body stretched before her, she notices a subtle change. After just three days without food, his lower ribs protrude slightly. At one point, he weighed 32 pounds. They won't weigh him again.

Such a small boy. So many problems.

At nearly 4 months old, while the adult daughter of a close friend looked after him, Dylan stopped breathing because of fluid buildup in his lungs. The babysitter performed CPR, saving his life, and Dylan was rushed to the hospital, where doctors installed the tracheotomy tube to open an airway.

At about 1 year of age, Dylan came down with pneumonia and once again went into the hospital. When Dylan stopped breathing, medical staff put him on a ventilator - a measure that moved his parents to put advance directives and a do-not-resuscitate order into writing. Still, Dave and Kerri were uncertain.

"If they change their minds, they will let us know," reads a handwritten notation in Dylan's medical records.

It seemed only a matter of time before the boy's body gave out.

"We knew Dylan would not be with us forever," Kerri says. "But back then he didn't have seizures all day. He had a comfortable life. It seemed like he didn't mind being here. You could see in his eyes that he had consciousness and reaction to what was going on around him."

To Dave and Kerri and other family members, Dylan seemed responsive to familiar voices and occasionally sensitive to bright light and color in certain video movies. He would stiffen his legs in apparent displeasure during a diaper change.

Exactly what he saw or heard, if anything, had always been a mystery.

At 2, surgeons removed his salivary glands to reduce secretions that might block his airway. He underwent one operation to fix his eardrum and three more to install and adjust drainage tubes in his ears. At 3, he needed surgery to realign both hips and spent six weeks in a full body cast.

His head failed to grow with the rest of his body, and it remains about the size of a 7-month-old's. When Kerri looks at him she sees ...

The eyes, deep and blue. The hair, thick and sandy, with a rakish wave - the kind of hair she loves to run her fingers through. And the eyelashes, long and dark, the envy of all her friends.

Beauty.

Now Dylan lies on the floor, wrapped in towels and a hooded, terry-cloth robe. Kerri slathers lotion on her hands and begins to massage his legs. She touches each tiny toe, works her way up to his belly and chest, strokes his arms and shoulders. This has been a time of connection for mother and child, ever since nurses in the neonatal intensive-care unit taught Kerri infant massage when Dylan was 2 weeks old.

"His little body speaks to me," she says.

Today, it tells her that he's tired.

Kerri presses her nose against Dylan's. His mouth reflexively closes into something like a pucker. The nose-touch is her son's kissing button, and she presses her lips gently against his. Again. And again.

"I always feel like he's kissing me," she says. "He may not be actually doing it, but ..."

Her voice weakens and rises as tears well up. She fights them back, rubs his arms. He sighs. She runs her fingers through his hair, spreads lotion on his face, changes the neck strap that secures his trach, swabs his ears.

Then Kerri slips a T-shirt on her son and pulls a pair of shorts up over his diaper. The waistband swallows him - another indication of Dylan's diminishing presence. She removes the shorts and finds a smaller pair.

Dressed, the little boy again reclines in the beanbag chair, covered from the waist down by a blanket. Lily climbs into his lap, sprawls her own scrawny body across his legs and closes her eyes.

Kerri can see subtle signs of discomfort, even through the medication. Her finger traces the ridge of Dylan's furrowed brow. His lip quivers in what she calls his best Elvis impersonation.

"I know it's the best thing, but you see him getting skinny ..." she begins. "It just hurts. I always wanted the best for our baby. I just want him to be happy. And I know he'll be happy when he's somewhere else."

Who is Dylan?

As their vigil continues, Dylan's family ponders where they end and he begins.

The next morning, Kerri sits Dylan on her lap and goes about the daily routine, angling a toothbrush into his mouth.

"I thought he was going," she says.

The calm in her voice belies the tension of the night before, when her son's breathing grew shallow and both parents felt Dylan slipping away. Nurse Vicki even began a round of emergency calls on her cellphone.

But Dylan rallied.

"Then his eyes were wide open this morning," says Dave, who caught fitful sleep on the living room couch. "It was kind of spooky."

They began the morphine last night - less than half of 1 cubic centimeter, pulled carefully into a syringe and then mixed with 50 cc of water, along with some Motrin to soothe a fever that seems to come and go. Now, they repeat the pain medication every four hours, sometimes more frequently if Dylan seems distressed.

"I tell him every time I lay with him, he can fly with the angels, and they're waiting," Kerri says. "He doesn't have to hold on."

But hold on he does, and others hold on to him through hours marked by a succession of video movies playing on Kerri's TV. In this fifth day without nutrition, in the wake of the first indication that the ordeal may be heading toward a speedy end, Dylan spends his time in the arms of Dave or Kerri, or Dave's brother Jonathan, visiting from Texas, or Grandma Vicki, or one of several others.

They run fingers through his hair, stroke his arm, kiss his head. Dave and Kerri had been told the process could take anywhere from two days to two weeks, possibly longer, but that there are no accurate means to predict these things.

Dylan opens his eyes - sometimes, it seems, to check out each new visitor. But then they quickly close and he slips back into limp repose.

One of Grandma Vicki's "memory books" circulates among the guests, this one the first of three completed editions. She's working on a fourth - each of them artfully and cleverly conceived by a woman whose scrapbooking abilities and paparazzi-like persistence with her camera shine through these volumes.

The photos begin shortly after Dylan's birth, and Vicki has recorded all the vitals: Born at 11:37 a.m. on Dec. 3, 2000, weighing 5 pounds, 11 ounces, 19 inches long. She has pictures of his first bath, his first Christmas, as well as some less joyous milestones.

First breathing tube.

First feeding tube.

"Here are some more pictures of me before I had to get my breathing tube. I was 4 mo. old when I had to get it," reads one of Vicki's notatio