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."
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?
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
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:
Justifications for Starving Dylan
Dylan had a “lolling head”
Dylan had “open but vacant blue eyes”
Dylan might “want to go”
Dylan had “severe cerebral palsy”
Dylan was “virtually blind”
Dylan was [virtually?] “deaf”
Dylan was [virtually?] “immobile”
Dylan was “unable to communicate”
Dylan couldn’t “perform any voluntary function”
Dylan alternated between “expressions of pain or calm” due to “neurological damage”
Dylan had no expressions that “relatives, doctors or nurses could decipher as joy”
Dylan “cried silent tears”
“seizures rattled” Dylan
Dylan “spoke only in heartbreaking body language”
Dylan “spoke” in a “furrowed brow”
Dylan “spoke” by “rigid muscles”
Dylan had “a discolored tongue”
Dylan took “heaving breaths that whistled and gurgled”
Dylan had a “tracheotomy tube”
Dylan achieved “no [annual] developmental milestones”
Dylan never took his “first steps”
Dylan never spoke his “first words”
Dylan never did a “first anything”
Dylan’s parents broke their own engagement in “the difficulty of caring for a severely disabled child”
Dylan’s “seizures had intensified”
Dylan had “spasms repeatedly” despite medication
A few times daily Dylan’s “body would shake” from seconds to “as long as 40 minutes”
Dylan’s “energy would… ‘flop him like a rag doll.’”
Dylan would “shiver uncontrollably”
Dylan was “tube” fed from “his first month”
Dylan's “seizures worsened”
Dylan's “bad days began to outnumber his good ones”
The Denver Post specifically identified this condition as coinciding with the mother’s acceptance of the possibility of starving Dylan
Dylan himself might “choose death over his deteriorating life”
Suicide is wrong, and not a moral solution to suffering, and becomes epidemic, with young and old killing themselves to end physical and emotional pain.
Dylan “stares blankly at guests”
Dylan “appears to be [in] a state of semi-consciousness”
Denver Post reporter Simpson records his own questionable opinion here, on the day before the starvation begins.
Dylan’s “suction pump” makes a “grinding hum” as it “clears his airway”
Other Justifications for Starving Dylan
“The chairman of the ethics committee at Denver's Children's Hospital… estimates he has participated in hundreds of cases where nutrition or other life-sustaining measures were ceased”
The intentional ending of life is common by America’s medical professionals. Of course, when wrong becomes common, it does not thereby become right.
Children’s Hospital’s “ethics” committee considers starving “about five [children] each year”
Dylan’s “doctors covered all the bases”
“the parents [informed Children’s Hospital of] their wish to end their son's suffering”
Whether or not killing patients ends suffering, it is wrong to do so.
“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”
Over time, of course, the motives of the parents will become decreasingly relevant, for since doctors believe that mercy killing is in the best interest of the child, Children’s Hospital eventually will not withhold euthanasia for other Dylans, regardless of his parents motives, whether for relief, insurance, or inheritance.
“the ethics committee… concurred that the hospital could support removal of life support - in this case food”
“Friends and relatives” concur and the day before starvation began, they gathered “to celebrate the ways that [Dylan] had touched so many lives”
Effectively, they gathered to say “goodbye” to Dylan.
Maternal “Grandma Vicki,” who attends Victory Church [which information is not in the Post article] concurs with the decision.
Grandma ” says she has known since her grandson was 3½ that he would not live past age 5. God told her, she says.”
Superstition: This is the first example of superstition from mother and grandmother, in which they take comfort, rather than looking to Scripture, which is noticeably absent from their thinking.
Grandma says, “I don't want him to suffer any longer”
Which is a wonderful sentiment, unless it leads to the intentional ending of the child’s life. Millions suffer, countless ones incurably or inconsolably, and God never authorized men to kill as a treatment for pain.
Grandma says, “I know because he's crying that he's hurting. It's not fair to keep him here.”
Grandma would undoubtedly agree that she is not the authority on what is fair, or unjust: God is. And God has not authorized parents to starve their suffering children.
Paternal grandma “Patricia” notices that Dylan “doesn't have the strength he had before”
Of course, if he were dying, they wouldn’t have to kill him. Children’s Hospital likely believed Dylan strong enough to live on, for if he were dying, they could spare the ordeal of starving him.
At the going away gathering, his maternal step-grandpa Don, who has written poems about Dylan, says he is working “on another piece – ‘kind of the farewell one’"
Dylan’s public school “teachers and therapists… all file through, sharing fond memories.”
* defines euthanasia and its stages, showing where Dylan’s death fits in;
* reminds readers of the euthanizing of 200,000 Germans, which practice prepared Germany for the slaughter of millions of Jews; and,
* concludes with a few devastating examples of America’s culture of death.
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]
* defines euthanasia and its stages, showing where Dylan’s death fits in;
* reminds readers of the euthanizing of 200,000 Germans, which practice prepared Germany for the slaughter of millions of Jews; and,
* concludes with a few devastating examples of America’s culture of death.
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
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
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 Medicine2003; 17: 97 /101 Medicalized killing, withholding/withdrawing futile treatment and `terminal sedation’
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.
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.
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."
"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.
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.
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 notations, giving Dylan the voice he would never have on his own.
On the pages of the memory book, he speaks.
"I sure like bath time!"
"Look at these big beautiful eyes!!!"
"Here I am with Jason, my physical therapist. He sure is giving me a workout. This is to keep me limber and not let my bones get stiff! Tough stuff!!!"
Grandpa Don Saiz pauses to reflect on a still and silent boy's impact and peel back the layers of a complex question: Who is Dylan?
"He taught me that love is special, because I found it with a very special boy, a boy with special needs," he says. "That makes it so different. You adapt yourself to do things with him. He can't swing or run or catch a ball. But that all becomes irrelevant. You find the means to have a day of enjoyment with him."
And oh, what a day they had at George town Lake, with Don casting lines for both of them off the dock and hauling in 10 fish. And what about the time last year, when he and Vicki took Dylan to revel in the fall colors on Mount Evans?
And there's the time Don spent reading to the grandson on his lap - or just snoozing together in a chair.
Without a word, he marvels, Dylan could just suck you right in, dazzle you with those big blue eyes and some indescribable power that reached out and connected with anyone who took the time to know him.
"He can project so much without being physical or vocal," says Don. "There's a love that grows. It's hard to define or pinpoint. But it's developed as I've known him."
Vicky Bostwick - the first Nurse Vicky, who cared for Dylan from 5 months to 4 years - describes him as one of the most severely brain- damaged kids she has seen in 26 years as a pediatric nurse. How did she decipher the thoughts and feelings of the child behind the unblinking blue eyes?
"It was your best guess," Bostwick says. "That's a terrible way to put it, but I worked full time for four years, and I just took a guess."
Picking him up seemed to calm him down. Certain voices - Mom, Dad, Grandma - seemed to strike a chord with him. Perhaps even involuntary movements formed a crude, or perhaps just imaginary, form of communication.
"With these seizures becoming so bad and constant, maybe this was Dylan's way of saying, 'It's time; I'm ready,"' Bostwick says. "We don't know. But with the seizures, if you'd see his body contort and tweak, it looked painful. Then you're thinking, 'If this is going on, is he in pain all the time?"'
At the Bal Swan Children's Center, a private preschool that mixes kids with disabilities with typical preschoolers, Tammy Nicholson welcomed him into her classroom.
Dylan attended the school one day a week and, accompanied by his nurse, got to ride a school bus. He lay among building blocks, painted a duck for Dave, made a card for Kerri - with help, of course. Classmates would introduce themselves - "Hi, Dylan, my name is ..." - and then activate an electronic toy for him.
He was bounced on a trampoline, worked out in the swimming pool, introduced to a variety of tactile experiences - Play-Doh, shaving cream, homemade "goop."
"He'd get kind of teary-eyed, and his mouth would quiver if there was something he didn't like touching or felt uncomfortable with," says Nicholson. "We saw that improve from when he started out."
"Improvement" rested on interpretation of Dylan's reactions to stimuli - who could ever really know what he saw, heard, felt or thought? Most of all, school provided an immersion in normalcy, a mainstream experience that, Nicholson hopes, somehow improved his quality of life.
To the other children, Dylan was simply a classmate, a once-a-week piece of their school experience.
"On the days he wasn't in school, I'd ask the class, 'Who's not here?"' recalls Nicholson. "And the kids would immediately say, 'Dylan!' He's just a sweet little boy. He just enriched the whole classroom."
As the days pass, certainty retreats and returns, plaguing Dylan's parents.
In Kerri's small apartment, the scene has become surreal to both parents. It sometimes seems that nothing is happening here, except that they have picked out a niche for their son's ashes on a distant mountaintop and they no longer go to work each day.
They reflect on a life that has been defined mostly by what others have brought to the relationship. Dylan's voice echoes only in the conversation balloons of Grandma Vicki's memory books, or in what others speak aloud for him. His body language consists of reflexive movements and the gestures others might make with his tiny limbs.
A wave goodbye.
"His whole life has been a puppet show - it's been what we wanted it to be," Kerri says. "If I talked to him and he moved his hand, I'd remark how he must have liked that, like it seemed he understood what was going on. I don't know. Maybe some sounds captivated him. We don't know what he could hear. His life has been ours, like I would want my little boy to be."
She changes his diaper, washes his face, massages his limbs. When she picks him up and rests his head in the crook of her neck, his arms fall across her shoulders.
Something like a hug.
With each passing day, the dying process seems more real. For all the questioning that has dogged him, Dave finds himself feeling more certain about the decision.
"It's to the point where I can see it coming," he says. "There's no changing our mind now. It's the right thing to do."
"Still," offers Kerri, "it's like this little evil person sitting in the back of my mind. Sometimes it feels like those questions are all that are in my mind. Am I doing the right thing? Is there more I could have done? When I ask, I get the same answers. There's no technology to make him whole. Things were going to get much worse. Where would we be in another week?"
One evening, as Dylan's grandparents prepare to leave, Grandma Vicki offers him a quick farewell.
"See you tomorrow, Dylan," she says.
The words instantly grate on Kerri. She has been softly assuring Dylan that it's OK to let go and has asked her mother to stop giving Dylan a reason to stay another day.
"Don't you respect my wishes?" she asks.
It is a small scene, produced by seven days of grinding uncertainty and too little sleep. No voices are raised, but there's tension as Kerri and her mom part company in a misunderstanding over metaphysics: What keeps body and soul together?
"People hold on for the weirdest things," Kerri says.
Though Dave and Kerri never married, Dylan's care was always a joint effort.
With a father who doubled as a Baptist preacher and part-time carpenter, Dave Walborn and his three siblings went to church every Wednesday night and twice on Sundays growing up on the shores of Lake Erie in the town of Oregon, Ohio.
Dave, the hyperactive youngest child, expressed a rebellious streak, struggled in school and, after graduation, made little progress on a business degree at Ohio State before turning to carpentry. Through his 20s, Dave worked with a restoration company in Ohio before heading west to another Oregon - he landed in Portland - and switching his focus to custom homes.
When the winter rains hit the Pacific Northwest, he tended bar and waited tables. And he met Kerri Bruning.
Kerri had grown up in the Denver area during what she regards as a forgettable childhood. Her father died in a motorcycle accident when she was 4, and her mother had remarried and divorced by the time she turned 14. After graduation from Rangeview High School in Aurora, she attended cosmetology school and then landed a job with a national restaurant chain.
She hit the road to help open new stores in Iowa and Maryland and then, in 1999, wound up in Portland.
She and Dave dated for a while, and when Kerri jumped at a job opportunity back in Denver, the plan called for Dave to follow a few months later. He'd been pursuing his musical interest in percussion, had discovered "a gift" for African rhythms and had nearly saved enough money to study under one of the masters.
A week after she arrived in Denver, Kerri called Dave back in Portland and told him she was pregnant. Dave expedited his move to Colorado.
He found construction work, and the two of them set up house and awaited their child's arrival. They couldn't agree on whether to learn the baby's gender ahead of time.
After one prenatal visit, Kerri's doctor scribbled the news on a slip of paper, sealed it in an envelope. They got as far as the parking lot before they threw down rock-paper-scissors. Kerri won and instantly tore open the envelope.
Kerri recalls during her pregnancy how Dave, the aspiring percussionist, would drum rhythms on her belly. They talked about names: Both liked Dylan, and were basically searching for a middle name, something that had a "y" sound to it.
While watching an Ohio State football game on TV, Dave spotted a player whose name seemed the perfect complement, especially considering how Kerri often remarked how he was "riling" inside her. And so Dylan Riley Walborn entered the world at Swedish Medical Center.
They knew from the first frantic minutes after a difficult delivery - the ordeal left Dylan's face bruised and nurses immediately rushed him to intensive care when he failed to breathe on his own - that the birth had dealt them extraordinary circumstances.
And those stretched beyond Dylan's physical appearance to his gradually emerging neurological problems.
"He basically could do absolutely nothing," says Brian Greffe, medical director of the Butterfly Program and one of the doctors familiar with Dylan's case.
"Any baby that has had a stroke has a more fragile physiologic state," adds ethicist and pediatrician Mokrohisky, "so they're presenting through the very difficult birth process with two strikes against them."
Dave, pointed by the moral compass of his church upbringing, asked Kerri to marry him at Christmastime, even as Dylan's difficulties began to emerge during a month-long hospital stay. Kerri, also wanting to do the right thing, accepted.
But gradually, the romance soured. They scrapped the engagement.
Despite their split, they remained close - only because it seemed the best thing for Dylan. Even after they moved to separate residences, they never needed a custody arrangement, child support agreement or lawyers.
"I was fighting so hard for her and for him," says Dave. "I didn't get her, but there was still him."
When Kerri moved from one suburb to another to be closer to her mother and stepdad, Dave found a place nearby so they could still easily share time with their son. Doctor visits remained a joint effort. Although both have become involved with other people, they never lost respect for each other as parents.
"She's the best mom that boy could have," says Dave. "It was just something we had to deal with. He was No. 1 to both of us."
"I'm blessed to have had Dylan with Dave," Kerri says. "There are men who run out on women with normal children, let alone one with 24-hour needs. We weren't meant to be together, but Dylan was meant to be with both of us."
At first, Dylan's arrival triggered pain and questioning.
Depression washed over Kerri in the tiring, frustrating first months before she eventually found renewed strength - sometimes just from watching Dave and seeing how he cared for Dylan; sometimes from the growing sense that there was a greater good forming somewhere on the horizon; sometimes from her amalgam of faith and spirituality.
Dave, despite a staunch religious grounding, lashed out at a God that would create a child so hopelessly disabled.
But both came to terms with their son's condition, loved him and cared for him while adapting to what trauma survivors often call "the new normal."
Kerri picked up the infant massage techniques from the nurses in the NICU and later became certified through a massage therapy course. Both she and Dave drove to the state Capitol - with Dylan in tow - to testify on home-care issues.
Friends found their devotion remarkable.
"I couldn't fathom what Dave and Kerri have been through since Dylan was born," says Kevin Smeiles, who met them through mutual friends five years ago. "Dave would give you the shirt off his back, and Kerri's the same way. Their love for their son is awesome."
Dylan's parents moved slowly and separately toward acceptance of his deteriorating condition. They'd already signed a do-not-resuscitate order and had some advance directives in place to avoid extreme lifesaving measures.
But those decisions felt different from this one.
"We never thought we'd have to say, 'Yes, let's discontinue feeding our son,"' Kerri says. "I'd never say I'm comfortable with this. But when did I realize I wanted his suffering to end? When he was born and came into the world all bruised and blue. Now, the way to have him not suffer is to let him go."
At night, Dave and Kerri arrange Dylan on the flattened beanbag chair with cushions and a blanket in the middle of the room. Dave sleeps on the couch, Kerri on Dylan's mattress pulled into the living room - or vice versa.
Between them, where both can hear his labored, shallow breathing, rests Dylan, the last common denominator in a fractured relationship.
"I hope that afterward we'll continue to talk," Kerri says.
"Once things happen here," offers Dave, "maybe we'll meet once a year and go up there to Mount Lindo together. There's always going to be a bond."
The pace of Dylan's undeniable but slow process takes its toll on witnesses.
On Dylan's ninth day without nourishment, his limbs hang limp. He hasn't stretched in days. It seems the fight has gone out of him.
And one more thing.
"His button's not working anymore," Kerri says, the words catching in her throat. The little nose-touch that reflexively puckered her son's mouth into something like a kiss now produces no response at all.
Funeral arrangements have begun to take shape: a viewing of the body, followed by cremation and a memorial service a day or so later. Dave and Kerri have scheduled a meeting at Mount Lindo to settle on the final resting place.
"See ya later, alligator," Dave says, laying a kiss on the boy's head as they leave him with Nurse Vicki.
"Goodbye, Dylan," Kerri says.
They wind along the two-lane highways that meander toward U.S. 285 and the turnoff to Tinytown.
It's chillier than the last trip, but the late afternoon sun highlights the west-facing portion of one stone- and-wood-beam structure that, nestled against a stand of evergreen trees, features a vertical row of six niches.
"What about a flower holder?" Dave asks. "Is that something you'd want, Kerri?"
They settle on the third niche from the top. Kerri asks about an urn for Dylan's ashes. There are many options, the woman from the funeral home explains. Some families buy containers specifically made to hold remains.
"But I've also had families go to Michael's or Hobby Lobby and find a nice container," she says. "Or I've seen them use grandma's cookie jar."
An idea strikes Kerri.
"His Tigger box," she says to Dave.
The decorative container had been a gift from Dave's mom as they trimmed his room in a Winnie-the-Pooh motif.
"Call me with the measurements," says the woman, "and I'll see if it works."
When they return to Kerri's apartment, a flier on their door reminds them it's Halloween.
Grandma Vicki arrives and holds Dylan on the couch, while Dave and Kerri answer knocks at the door. One of Dylan's young friends has sent over a pumpkin costume, and Vicki unfolds it and lays it over him like a blanket.
"You are my little pumpkin," she says playfully.
"You want to put it on him?" Kerri asks.
Dave helps Vicki to pull the puffy orange vestlike costume over Dylan's head. A green winter cap serves as the pumpkin stem. Dave grabs the video camera and captures his son's last Halloween. Grandma Vicki takes Dylan's arm and waves it at the camera.
"Are you going to open your eyes?" Dave asks.
But Dylan's lids droop. Dave slides off the green hat and gently kisses the top of the boy's head.
* * *
Two days later, Michelle Cox, the social worker from the Butterfly Program, stops by to check on how everyone is doing. Something seems to be missing.
"Where's the puppy?"
The Shar-pei they named Lily, for the past several days a fixture in the living room and, much of the time, at Dylan's side, is conspicuously absent. Kerri, while retrieving the mail, had noticed a lost-dog handbill posted in her apartment complex.
Her friend Lisa Adducci, who had found the wandering pooch, called the number on the flier and arranged to meet the presumed owners. Kerri went along. After some discussion and examination, it was agreed that Lily was indeed the lost dog.
Sadly, the women handed over the puppy.
"Your dog came to us for a reason," Kerri told the owners while Lisa openly bawled. "She'll have a little bit of my son's spirit in her."
Later, Lisa echoes Kerri's notion that Lily's unscheduled stop in their lives had mystical overtones.
"God sent this puppy to comfort us, to comfort Dylan," she says. "She was sent to us for a reason. That's another reason I felt compelled to give her back - is Dylan holding on until the puppy finds its rightful home, so he can go home, too?"
Back at her apartment, Kerri has rearranged some of the living-room furniture. A library table has been pushed against a wall. A thick, white candle burns on top, surrounded by artifacts of Dylan's short life - the "Piggie Pie!" book, some small stuffed animals, a piece of artwork given to him by a young friend.
"It's kind of a little shrine," she explains, "to help with his spiritual passing."
The mist from Dylan's nebulizer seeps from the connection between the tube and the trach and curls around his face like a fog. He sits on his mother's lap while Dave turns on the laptop computer and plays the musical slide show that a friend compiled for Dylan's funeral and burned onto a CD.
Dylan in Grandma's cowboy hat. In an Incredible Hulk costume for Halloween. Sporting a body cast after hip surgery. His tiny arm displaying a wash-off dragon tattoo.
Kerri snuggles Dylan and taps her foot to the background music, the Tom Petty tune "Wildflowers." She fingers the string on a helium balloon with her free hand and softly sings the chorus:
"You belong among the wildflowers
You belong somewhere close to me
Far away from your trouble and worry
You belong somewhere you feel free."
She plants a kiss on his cheek as the slide show winds to a close.
"Wow, Dylan," says Kerri to the sleeping boy. "You're pretty powerful."
That power has been amplified by the waiting - it has now been 11 days since the boy's last feeding - and moves people in different ways.
A couple of days earlier, Grandpa Don had been overcome as he watched his dying grandson, left the apartment in tears and cried all the way home.
So now, when Grandma Vicki arrives to visit and mentions that Grandpa Don is on the way, Kerri looks shocked. After Don's recent meltdown, Kerri asked her mom to explain to Don that she believes Dylan can sense the sorrow and thus clings to his physical body.
But Vicki hasn't done that, and Kerri presses her mother for a clarification: Does she support what they're doing or not?
Vicki pauses to pick her words carefully.
"I guess ... I just don't understand," she says.
Kerri's jaw drops. Is her mother questioning the basis for their decision? Or does she just not remember seeing Dylan shudder uncontrollably, defying the seizure medication that has been repeatedly ramped up with no lasting effect?
She fights the angry urge to tell her mother to leave but says nothing.
For Vicki, Dylan's decline tugs her in two directions.
She knows that only Dave and Kerri truly understand the severity of his suffering. But overwhelming sorrow, coupled with religious faith, also moves her to pray for a miracle.
Recently, when she mentioned the pending funeral arrangements to a friend from church, the woman told her she had a defeatist attitude. The words stung, because Vicki doesn't feel that she's given up on God, and a miracle, at all.
And she sees no contradiction in her support of the decision to end Dylan's life and her faith-driven prayers to heal him.
"I'm just saying, 'God, it's your will,"' she explains later. "He can heal Dylan. But whether he heals or he doesn't, I have to accept that. It may take awhile. I still cry every day. But I support Kerri and Dave. He's their child. They both love that baby so much."
But now, the tension bounces off the walls of the apartment and, with neither Kerri nor Vicki pressing the point, dissolves in the silence. The moment passes, and Kerri smooths over the conflict by suggesting to her mom that she hold Dylan.
Grandma Vicki smiles and pulls out her camera.
Signs and stars
Dylan's endurance means only that his timing is up to him, his parents say.
"Do you think a miracle is happening?"
The question comes to Kerri over the telephone from one of her girlfriends. Kerri gazes at Dylan lying on the couch and marvels at what she sees: a boy who's definitely skinnier than two weeks ago but otherwise not terribly different. His cheeks are full, almost cherubic.
After the false alarm of the first week, he has stabilized.
Still, as remarkable as their son's condition seems, and even though the vigil has extended beyond their expectations, Kerri and Dave read nothing into this except that Dylan will leave them when he's ready.
"Unless he opens his eyes and says to me, 'I'm going to eat. I'm going to develop,' then I'm not going to consider this an act of God," Kerri says firmly.
Talk of a miracle segues into a simple discussion of water.
At the start, Dylan's fluid intake remained at normal levels - partly to help him digest his medication and partly to make him comfortable. But that has had an elastic effect on the ordeal.
Even after cutting back by half, Dave and Kerri wonder if they're giving him too much. They consult a nurse with the Butterfly Program and reduce the amount by half again - now down to less than 7 ounces a day.
Over the next week, Dylan's limbs grow noticeably stiffer. Kerri massages him and stretches his arms and legs. His morning diaper is bone-dry. Now, for the first time since the feeding stopped 21 days ago, he empties his bowels.
Things are changing.
Kerri passes time by trying to count the leaves on a small tree near her patio. She counted 99 the first day. Today, only five - and the wind is picking up.
Shortly after lunch, Kerri picks up her cellphone and punches a button to check the current time. But something else appears on the screen.
One thick white candle burns low in the shrine to Dylan - the fifth since the vigil began, not counting about a dozen tea-light candles.
Kerri snuggles Dylan on her lap, lifts his T-shirt and draws her finger along his ribs. She pulls at the waistband of his pants and sees one hip bone jutting sharply against his skin.
For the first time, she notices a rash over the bone. It's a troubling sight - particularly so since Kerri and Dave have taken pride in the fact that in nearly five years, Dylan has never had a bedsore.
Later, a waking vision haunts Kerri: sores cover Dylan, hideous evidence of his body's breakdown in preparation for death. She prays it won't become a reality.
Later still, sitting on her patio and gazing into the sky, she spots a shooting star.
"Let go ..."
After all the waiting, Dylan makes his exit quietly, in his mother's arms.
When they awaken on the morning of Nov. 16, they know.
Kerri rises from the couch, Dave from the mattress pulled into the living room next to where Dylan lies. His hands, feet and face have turned cold, yet his torso burns with fever - 107.2 degrees when they take his temperature. His breathing becomes quicker, shallower.
Kerri calls Nurse Vicki and asks her not to come to the apartment as scheduled; she and Dave need this time alone with their son. Dave cradles Dylan in his lap on the living room couch and then passes him to Kerri and curls up next to them.
They whisper to him.
"Let go ..."
"Take your first steps ..."
"Save us a good spot ..."
They tell him how much they love him, how they'll miss him.
About 8:30 a.m., Kerri puts her hand on Dylan's chest and feels the weak rise and fall. His mouth twitches oddly. She and Dave look at each other with the same question.
"Was that it?"
They detect a slight pulsation on his tongue, then stillness. Dave finds their stethoscope and presses it to Dylan's chest - nothing. Kerri listens.
And this is how it ends - quietly, peacefully, with the two people who brought Dylan into the world witnessing his departure.
* * *
Dave, who had known all along that this moment would bludgeon him, begins to cry. Kerri can't find tears - though she feels empty and sad, the moment also brings peace and relief.
It is the 24th day since they stopped feeding their son.
They call Nurse Vicki back, and she speeds over to the apartment. As planned, she checks for a heartbeat and respiration and, finding neither, dials the pediatrician and relays the news. He repeats it back to her - twice.
"It's 10:10 a.m.," he says. "No heartbeat or respiration. It's 10:10 on 11-16-05."
Over the telephone, the doctor pronounces Dylan dead.
Nurse Vicki begins preparing the paperwork for the coroner. She feels a wave of emotion coming over her, then sobs. She has seen others die, but always adults. Children are different.
Kerri breaks the tension.
"You know," she says to the woman who has been their primary home nurse for the past seven months, "you're fired."
Time moves quickly now, though Dave and Kerri move in a fog.
Pastor Buddy Conn sits cross-legged on the living room floor in faded jeans, a long-sleeved T-shirt and a blue baseball cap, helping them organize their thoughts on final arrangements for Dylan.
Michelle Cox from the Butterfly Program also works her cellphone. She's calling the mortuary to make sure it can accommodate a viewing and cremation on consecutive days. There seems to be a problem. More calls fix the misunderstanding.
At one point, several cellphone conversations seep from the living room to the kitchen to Dylan's bedroom. Details. More details.
"I'm confused," confesses Kerri at one juncture. "I'm not sure what's happening yet."
Vicki Saiz sits on the couch now, caressing her grandson. Dave punches up an old video loop on his camcorder, hands it to her, and she peeks into the viewfinder to see scenes from Dylan's first day home from the hospital, even as she cradles him in death.
Grandma Vicki got the news at work. Grandpa Don got the call while driving RTD's Longmont-to-Denver route. A relief driver met him in Lafayette.
Now he arrives, in uniform and in tears. He hugs Kerri and Dave, then leans over and kisses Dylan's forehead as he lies on Vicki's lap. He takes his turn on the couch and holds Dylan one last, long time, cradling the boy's head in his hands.
Before he leaves, Pastor Buddy asks the family to pray with him. Dave and Kerri, Vicki and Don gather at the couch, where Dylan's body still lies on Don's lap, and they all join hands.
Pastor Buddy prays a meandering, halting, heartfelt prayer about leaning on Jesus in this time of sadness, acknowledging that while Dylan's pain has gone, those left behind must cast their pain to God.
He rises from his knee, still teary, and tugs his cap back onto his head. He hugs Dave and Kerri.
"We know he's safe now," the pastor assures them.
Grandma Vicki, still attending Dylan's body on the couch, gives her grandson a voice one last time.
"He says, 'I'll see you in heaven,"' she smiles.
Minutes later, a soft knock at the door reveals a tall young man in a dark suit with close-cropped hair and glasses. He's accompanied by an almost equally tall dark-haired, dark-suited woman. Their white minivan sits in the parking lot.
"We're sorry for your loss," they say softly.
Kerri kneels by the couch, where Dylan's body lies beneath a blue blanket, and rubs her cheek against his. She slides one hand under the blanket to grasp his. Dave paces the living room.
The funeral home workers ask: Would they like a gurney brought inside to transport Dylan's body to the vehicle?
Dave shakes his head. He will carry Dylan. The dark-suited man leaves to pull the minivan closer. The dark- suited woman produces two red roses for the parents.
Dave gently wraps his son's body in a quilt, lifts him and holds him close, then walks out the apartment door, down a dim, open-air corridor to the parking lot. Others follow in a shadowy procession.
They emerge into bright sunlight. At the curb, Dave gently lays Dylan's body on a stretcher beside the idling minivan. He and Kerry step back as the attendant slides it inside the vehicle.
Then Dave puts his arm around Kerri's shoulders, and she slips hers around his waist. After three and a half weeks of heartache, introspection, angst, frustration and fatigue, they say goodbye to their son.
Memorials remind Dylan's family how many lives his spirit managed to touch.
The following morning, Dave and Kerri drive to the funeral home under dark gray clouds that soon give way to snow.
It has been a mostly sleepless night for both of them. Dave's gathering head cold has erupted into a full-blown migraine so severe that it has played havoc with his stomach and the café mocha that used to be there. Kerri's cold, seemingly held in abeyance by the urgency of Dylan's final hours, runs rampant through her sinuses and lungs.
The parents sit across from each other at a mahogany table in a small room at the mortuary while a man answers their questions, explains the nominal charges and double-checks their personal information on the paperwork.
Kerri requests that some of the ashes be put into a bag, separate from those sealed in Dylan's "Tigger" box, so they can be scattered later.
The man asks what clothes they'd like Dylan to wear for the visitation the next day. Kerri and Dave look blankly at each other.
They kick around a few ideas - "What about a Hawaiian shirt?" Kerri asks. "Go out in style." But eventually they settle on another outfit: the knit sweater and pants Dylan wore on his first day of school.
Then Kerri realizes that Dylan has no shoes.
He has never had shoes.
About an hour later, Kerri finds the boys' shoes aisle at a nearby Target. She selects a nice pair of brown slip-ons and holds the sole of one shoe against her hand. She has no idea what size Dylan would wear, but she knows that his foot extends from the bottom of her palm to the last joint of her middle finger.
Turns out to be a child's size 8½.
She has brought along the sweater and slacks in a shopping bag, and now she removes them and spreads them on the store's carpeted floor. She places the brown slip-ons below the pants and views the ensemble.
Amid the wet snowfall, Kerri climbs back into her car and drives the outfit back to the mortuary: sweater, pants, socks - and Dylan's first pair of shoes.
The next day, she arrives at the church's cavernous sanctuary carrying a large stuffed elephant, two bulging plastic bags and a few medium-sized stuffed critters. Dylan takes up a fraction of the full-sized casket, and Kerri notices that her son's legs extend beyond the closed half-lid - hiding his new shoes.
She peeks to admire them.
She pulls five wooden block letters from one bag and assembles them against the open lid: D-Y-L-A-N. Then she fills the open space around the boy's body with stuffed animals. In the quiet, a quacking noise suddenly echoes.
Dave arrives and adds a stuffed bear wearing an Ohio State jersey. He and Kerri stand, side by side, gazing at their son. At once, they slide one arm around each other and squeeze.
For three hours, family and friends trickle into the church and take their turns at the casket. Some, like Grandma Vicki, linger long. Others take a respectful pause and move away. One friend stops well short of the casket and tells Dave he can go no closer.
Dave nods in understanding.
By early the next afternoon, the massive casket has been replaced by Dylan's metal decorative box adorned with a picture of Tigger. More than a hundred friends, family and acquaintances gather to pay their respects.
For an hour, prayer, songs and remembrances fill the vast sanctuary. Few words are delivered without tears, and most center on a recurring theme: Dylan may have done little with his damaged body, but he touched many with his spirit.
One of the last to take the microphone is Dave Walborn Sr., a father who admits that many years ago, as his youngest son struggled with school and responsibility, he never expected much. Yet now he stands in awe of Dave's devotion to Dylan.
Dave watches his dad, a former preacher, fight emotion with an uncharacteristically wobbly voice.
"I learned in the last couple of years that there are things to be proud of," says Dave Sr. "The things I've heard about my son in the last few weeks ... they're things I never thought I'd hear. I have great pride in the character of my son."
But he goes on to speak of regret. Living in Wisconsin, running his own business, he could always find a reason not to visit his grandson. It wasn't convenient, he'd say, and there was always next year.
"Now," he adds, "there are no more next years to come see Dylan. But we still have others to spend quality time with and let them know how much we appreciate them."
He lowers the microphone, takes a few steps to his right and stops in front of Dave's seat. He opens his arms
* * *
By Monday morning, Dylan has a new buddy.
Her name, derived from her regal bearing, is Princess Dragon Lily - a moniker that later will be shortened to simply Lily. She is a weeks-old Shar-pei puppy, all wrinkles and attitude, that one of Kerri's girlfriends found roaming a grocery-store parking lot a day earlier.
As Dylan lies sleeping in his beanbag chair, Lily climbs into his lap, curls up and closes her eyes for a nap. Like many things that will happen within these walls, this unremarkable development - a lost dog taken in - assumes almost mystical overtones.
Lily must be here for a reason.
Dave also has taken up temporary residence in Kerri's apartment, where he will spend the rest of Dylan's days and nights. Both parents have left their jobs to keep vigil.
Dave takes his son's hand, touches the tip of every finger. He leans down and kisses Dylan's head. Now, for just a little while, he and Kerri must leave.
"Bye-bye, pumpkin pie," Kerri says. "I love you very much. Mommy and Daddy are going to find you a beautiful place."
It's nearly noon on an autumn day. Only a faint haze taints a cloudless sky. Dave and Kerri climb into her Chevy Blazer and wind up Turkey Creek Canyon, turning off at the Tinytown exit.
Not far off the highway, they find the entrance to Mount Lindo Memorial Park and begin the climb up gravel switchbacks, passing stands of aspen barely clinging to dull yellow leaves and scrub oak already surrendered to winter. They reach an empty parking lot at the top of the climb and begin a stroll through the grounds.
Up here, the sky is brilliant. Tree-covered peaks nearby and snowcapped Mount Evans in the distance stand out in sharp relief. Under a warm sun and occasional breeze, Dave and Kerri walk in silence, each moving alone through the trails that wind among rustic stone-and-wood structures that hold cremated remains and family memorial sites often marked by engraved stone benches.
"Look at how the sunshine hits here, Dave," Kerri says, facing east from an overlook that reveals the city shimmering beneath a layer of dark haze. "This is nice."
Dave agrees - in fact, he declares that there isn't a bad spot on the whole mountaintop. Although they had originally envisioned Dylan's final resting place somewhere near water, they are taken with this landscape.
They pass a large cross marking a memorial site and Kerri stops, suddenly reminded how, when Dylan would sometimes stretch his arms and his legs would go straight and stiff, he looked like Jesus on the cross. She would reposition him, uncomfortable with the image but, in another sense, somehow comforted.
"I think he's been telling me that he's God's child," she says, "and he's being watched after."
There have been other odd hints. Kerri's much-beloved paternal grandmother died a year ago from a stroke - the same affliction that touched Dylan in utero - and many times since then, when Kerri has reached for her cellphone, its directory has for no apparent reason flashed a single name on the screen: VIOLA WELLS.
A sign, Kerri suggests, that her grandmother is waiting to welcome Dylan.
As for a place for their son's physical remains, Dave and Kerri need look no further.
"It's beautiful up here," she says. "He would really like it."
National Hospice and Palliative Care Organization: nhpco.org
Initiative for Pediatric Palliative Care: ippcweb.org
Bal Swan Children's Center: balswan.org
The Butterfly Program: chionline.org/
Kevin Simnpson Denver Post Staff Writer
Article Last Updated: 10/28/2006 06:16:52 PM MDT
Dylan Walborn's nightly feeding of Nutren Jr. through a tube kept him alive but also allowed him to experience increasingly difficult, probably painful and ultimately incurable seizures.
So while the term "medical intervention" is more frequently associated with technological advances, breathing machines or other dramatic equipment, in Dylan's case parents and doctors turned to that bag of liquified nutrients in balancing his medical care against his suffering.
"The nutrition issue is a very difficult one, because it is really laden with human emotion. Feeding and providing sustenance and fluid is so deeply ingrained in us to help another person that that is a very difficult decision," said Dr. Stefan Mokrohisky, chairman of the ethics committee at Denver's Children's Hospital.
"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," he said.
The legal authority to withhold nutrition from Dylan was largely grounded in the 1975 landmark case of Karen Ann Quinlan and in the 1990 U.S. Supreme Court case of Nancy Cruzan.
After Quinlan fell into a "persistent vegetative state," her father sought to halt any extraordinary medical procedures, even if that led to her death. A court initially rejected his request for guardianship, but the New Jersey Supreme Court ruled that decisions of life and death are best left to patients or their guardians and their physicians.
That decision, endorsed by several other courts in the years since, ultimately led to the creation of ethics committees at most of the nation's hospitals, including Denver's Children's Hospital.
In the Cruzan case, the U.S. Supreme Court made a point of defining medical treatment to include tube feeding.
"Generally, the case law is scarce in Colorado and supports parents' rights to make decisions that are demonstrably in the child's best interest," said Susan Fox Buchanan, an attorney and board member of the Colorado Health Ethics Forum, a statewide network of ethics committees.
Fox Buchanan also noted that the doctors consulted on such ethical decisions rely on much more than legal precedent.
"If you only look at the law," she says, "you aren't getting the whole picture about why doctors do what they do. All ethics committees take into account guidelines and position papers of medical societies."
Mokrohisky, who helped found the Children's ethics committee in 1984 and is co-director of the hospital's bioethics program, did not participate in Dylan's case but was briefed on it. He said that in cases in which parents and physicians want to allow a life to end, doctors use a "principle of proportionality" to balance the benefit of medical treatment against the potential harm.
After hearing from Dylan's parents, his pediatrician and his neurologist, two members of the ethics committee agreed that it was ethically sound to remove nutrition from the child, allowing him to die.
"We don't take a vote. We don't say, 'We think this is the way you should go,"' Mokrohisky said of the committee. "We say, 'These are potentially, ethically substantiated justifiable options, and we'll support you in your decision. We're not going to abandon you."'
While acknowledging the debate over the death of Terri Schiavo, and the beliefs of many that all life should be sustained under any circumstances, Mokrohisky said he hoped Dylan's story would help the public understand a process he believes is, at times, the ethical course.
"As people have said, we're a death-denying society, and turning that around to face the reality that every year 50,000 to 60,000 children are dying in the U.S. - well, how do they die?" Mokrohisky asked.
"Our obligation is to make sure it's in a dignified way, with as little pain as possible, in a loving kind of situation they choose."
That is the question any compassionate reader has after reading the lengthy Denver Post account of the death by dehydration of 4-year-old Dylan Walborn, who was born with multiple disabilities. Dylan died at home, 24 days after his feeding tube was removed, in the arms of his mother, while his father looked on, with the previous approval of doctors and nurses, and the full consent of the law.
Dylan, who suffered a stroke in his mother's womb, was not a healthy child by any definition. He could not walk, talk or perform voluntary movements; he needed tube feeding and suffered seizures. Doctors said he would not live a year, yet his strength surprised them all. His first years were happy enough though severely challenging for his parents, Kerri Burning and Dave Walborn, who never married. Though they'd been engaged briefly after their son's birth, the Post writer explains, "their short romance dissolved in the difficulty of caring for a severely disabled child and they called it off." Still, they arranged their lives and jobs to have apartments near one another and share the care of Dylan, who lived with his mother.
According to the Denver Post, when the seizures became more frequent, his parents began thinking about what was best for Dylan. Would he really want to live? A deadly thought, as it turned out.
The article, by the paper's staff writer Kevin Simpson, begins with Dave Walborn holding Dylan, "all 32 pounds of him," and saying, "Dylan, it's OK if you want to go. I don't want you to hang on for me." The child gives no discernible response, yet Walborn finally joins the boy's mother in deciding that "Maybe it was time to let go." Of course, for Walborn to "let go" in the scene the Post writer describes, would mean to drop Dylan to the floor. But what Dylan's parents did over the following days, after the gastrointestinal tube was removed to cut off nutrition, was more than to drop their son. They watched him starve over the course of more than three weeks, growing bone thin, limp, lifeless and finally too weak to breathe. At one point, they even fretted that they were giving him too much water, and cut back on the few ounces he was receiving to keep him comfortable and help digest the pain killers. So much for Dylan wanting "to go."
At sometime during the 24-day ordeal, why didn't the nurse who made daily visits to monitor his "progress," the relatives who stopped by to take pictures and offer "going away" presents, or the doctors who received reports of his decline, take time to observe that perhaps Dylan was stronger than they'd thought. Maybe he wanted to stay. Bruning's mother, "Grandma Vicki," was a churchgoer who was praying for a miracle of healing, and even suggested that Dylan's resilience was a sign from God. But in the article she never confronts her daughter on the issue, and seems to accept that she knows best. The article's author writes that Dylan's parents saw the boy's persistence only as a sign that "Dylan will leave them when he's ready."
Indeed, Kerri Briming sets a high standard for God's intervention that even the widow of Nairn, whose son was raised by the command of Jesus, would not have demanded. "Unless he opens his eyes and says to me, Tm going to eat. I'm going to develop,' then I'm not going to consider this an act of God," she said firmly.
Yet let me be careful. It would be easy to paint Dylan's mother as a Rocky Mountain Lady Macbeth, who would "have pluck'd my nipple from [my babe's] boneless gums/And dash'd the brains out. . ." Dylan's father may play a somewhat less introspective Macbeth, with his doubts about the enterprise overcome by his girlfriend's insistence and a final "fatal vision." Their characters, with allowances for modern twists of mind, may indeed fit the roles, and they may be subject to the most severe moral censure. Yet if Dylan's parents are moral monsters, they had a lot of help from the finer medical minds of our time, as well as the imprimatur, so to speak, of a parttime Christian minister, who prayed with them for God's guidance. If they had heard the words "wait" or "what?" or "why?" from an authoritative source, they may have been shaken to their senses and thought twice about their decision.
In Shakespeare's play, after Macbeth wields the knife and kills King Duncan, there is a pounding at the castle door that wakes him from his trance-BOOM! BOOM!- the sound of conscience, culture, the law of God and of man straining with all the might of right to enter the horrid scene. The King is Dead! Yet when Dylan dies-24 days after his tube was surgically removed under the auspices of the Denver Children's Hospital-there is silence. Conscience is convenience, the culture is death, the law is approving and God has been assigned a part-time pastor's role. I can imagine Dylan's mother with that "damned spot" upon her hands, seeking to wash it clean and suffering all the more because no one will tell her what she did was wrong. She will see Dylan's face, at waking or at sleep, and will know in her own mother's heart that she crossed a moral border, broke a taboo more deeply rooted than the murder of a king-she killed her own child-because she would not give her mother's milk, the most basic care of food and drink. She is able to live with the guilt, at least by daylight, because she receives smoothing smiles of support instead of censure for her deed. It would be wrong to call her a victim, but she is definitely a casualty of our culture of death, one of the walking wounded whose worst tendencies toward self-interest and justification were validated when they should have been restrained from the start.
There is one small but telling scene in the Post article that is the equivalent of the knocking at the door. Kerri asks her mom, who visited regularly in the days after the tube's removal, if she supported her decision. Her mother says, "I guess ... I just don't understand." The door was opened a little for Dylan's mom to rethink, but she refuses to turn back. She goes forward with a harder heart, no doubt, more resolved against this small resistance that Dylan must die.
But again, let me be careful. We only know of Dylan's parents what we read in the Denver Post. The reporter evidently was present during much of Dylan's 24-day ordeal (which raises questions about what kind of parents would invite a writer to view and report on these events), but we don't know their inner thoughts or private conversations. We have a journalistic treatment, perhaps accurate, perhaps not, certainly not the entire story. To read between the lines may be dangerous because a reporter gets to pick and choose his facts, to place events and quotes where they will have the greatest effect to make his own point, and to set the story in the direction he desires.
Although the article is largely sympathetic to Dylan's parents and the idea of euthanasia in general, it is possible to conclude that Dylan's parents were not acting in his best interest. Dave and Kerri, the article reports, were dating other people; they were moving on with their lives after their brief engagement years before. As Kerri says in the article, "We weren't meant to be together, but Dylan was meant to be with both of us." How could they ever go their separate ways, marry another and have their own families, with Dylan needing 24-hour care?
Perhaps that wasn't the motivation for removing the tube. Maybe they truly were concerned about Dylan's well-being, as they claimed, and the possibility that his more frequent seizures were causing him constant, inexpressible pain, that they could only judge by the tears that flowed from his large eyes.
Who is to say that anyone, even of pro-life conviction, could not come to the same conclusion after four long years of constant home care? And before we condemn Dylan's parents, let us consider, as Kerri said of Dave, "There are men who run out on women with normal children, let alone one with 24-hour needs." Dave arranged his life around his child.
The Post article gives a very moving description of Kerri giving her son a massage after a bath, a daily routine she performs with palpable warmth and love. She talks to him and for him, strokes him gently, kisses and caresses him. This mother is obviously not a monster. Yet she continues this routine after the feeding tube is removed and she notices his wasting flesh and protruding bones. One wonders how these physical facts register in her mind.
At another point in the article, she says, "His whole life has been a puppet show-it's what we wanted it to be." This, perhaps, is the explanation. She does not see Dylan outside of what she wants him to be. How could she, since he has never expressed a thought or a preference? If she thinks that she would be better off with him "in heaven," would she not naturally think that it would be his preference as well?
The reader may wonder, Why not give Dylan to an adopting couple? The answer may be the same one many women heading for abortion give sidewalk counselors who offer adoption services. "This is my child," they say. "I don't want anyone else to have it."
Who would be the sidewalk counselors for Dave and Kerri, to wield a STOP sign? Not the medical profession that has abandoned DO NO HARM as its first principle. Not the "ethics committee" at Denver Children's Hospital, which Dylan's parents needed to consult before the feeding tube could be legally removed. Certainly not a judge or lawmaker. Colorado's "best interest" version of its "substituted judgment" law had set up the equivalent of the Roman paterfamilias, with a modern utilitarian twist. Not only sickly and unwanted babies can be cast aside. Anyone of any age-from boys like Dylan to bothersome grandparents-could be starved to death if they could not speak and eat for themselves.
In the case of Terri Schiavo, who died a dehydration death in Florida a few months before Dylan's tube was removed, Michael Schiavo needed to show that Terri had expressed during her life some desire not to be kept alive in her condition. A legal case had to be made, a judge had to decide and a public record was developed that eventually activated the Congress and the President in Tern's behalf. Terri, of course, also had her heroic family fighting for her life against her estranged husband's wish to have her put to death. Interesting to note, also, is that the Post article never claims that Dylan was in a "persistent vegetative state," the term that was a death knell for Terri. A veteran pediatrie nurse, the article states, described Dylan as "one of the most severely brain-damaged kids she has seen in 26 years." Yet the only medical assessment offered in the article is "severe cerebral palsy." Dylan apparently could see, respond to stimuli and voices, and even attended preschool one day a week, where the healthy students accepted and assisted him.
Throughout the Schiavo ordeal, many legal and medical experts expressed surprise over the public nature of the case. Thousands of patients in Tern's condition, they assured us, are removed from life support and feeding tubes each year with little fanfare, with approval of relatives and medical staff. In Dylan's case, we see how accurate these experts were. Few knew about Dylan until the Denver Post published the lengthy account last December, about a month after he died. The article itself gives some insight into the frequency of death by dehydration: Dylan's case was one of about five that the Denver Children's Hospital consults on each year for the removal of feeding tubes. A national expert is quoted as saying, "It's absolutely not an unusual case."
Since Dylan, in his short life, could not speak for himself, it is right that others say something in his behalf. Unfortunately, his parents, though they loved him in their own way, chose wrong for him.
Valerie Brew-Parrish, who is disabled after a childhood bout with polio, writes with passion and insight about the treatment of persons with disabilities. She told this writer, "Do any adjectives exist in our vocabulary that can adequately describe my fury, outrage, horror, disgust and overwhelming grief at the loss of this innocent child? Reading this account [in the Post] of this deliberate murder by starvation was equivalent to entering the Twilight Zone. . . . Yes, Dylan had significant disabilities. He also had inalienable rights. Dylan supposedly was born into an enlightened society that protects those children that need protecting. Dylan's life should have been celebrated. He should have been loved, not discarded because he was not deemed perfect."
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. In the previous cases like Cruzan or Schiavo, someone had to provide evidence that you said you wanted life to be ended in this way if you got into a certain medical condition."
He added, "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."
Dylan's story is ultimately a story of love that was misplaced or lacking. Dylan's grandfather, who came to visit in the last days, said it best to the Post reporter: "He taught me that love is special, because I found it with a very special boy, a boy with special needs."
Yet love that turns too easily to sentiment or self-interest was not enough to save Dylan. What is needed is law. There are other Dylans, severely disabled children, teens and adults who have no one to express their "best interest." The words of Pope John Paul II, delivered to a medical symposium in March 2004, a bit more than a year before his own death, serve as a sound guide for the legislation that is needed.
I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering.
Law can be a clumsy "cure" when it comes to the intricate and intimate issues surrounding medicine and death, as was seen in the Schiavo case. At the end of the long court battle, polls showed that Americans did not favor the efforts to save Tern's life, perhaps thinking-not without reason-that they would not want the Supreme Court, the President and Congress to get involved when they fall ill. But legislation for end-of-life issues is needed if the medical profession will not follow its basic tenet of DO NO HARM. It is needed so that we need not ask of the thousands of patients whose lives depend on receiving food through a tube, the question that haunts the case of Dylan Walborn: Why?
Stephen Vincent writes from Wallingford, Connecticut.
Copyright Human Life Foundation, Incorporated Summer 2006
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Source Dylan Must Die
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