1-year-old dialysis patient 'pretty tough'

[okarol]

1-year-old dialysis patient 'pretty tough'

Jayden Woydziak doesn't weigh enough yet to be considered for a kidney transplant.

BY KAREN SHIDELER
The Wichita Eagle
Posted on Wed, Jun. 25, 2008

Every night, as Janelle and Dan Woydziak tuck their 1-year-old into bed, they also start up the medical procedure that keeps him alive.

They hook him to a machine that fills his abdominal cavity with a solution, drains it, then repeats the cycle a dozen times a night.

The process does what his kidneys can't.

Jayden was born two months prematurely with a bladder obstruction that made urine back up and ruin his kidneys.

Patients have to weigh at least 33 pounds to be considered for a kidney transplant, so while Jayden grows, he undergoes the nightly peritoneal dialysis. He weighs about 20 pounds now.

About two cups of solution go into his abdominal cavity through a catheter that was surgically implanted in his abdomen. The cavity is lined with a membrane called the peritoneum, and the solution draws waste products and extra fluid from his blood and into the cavity, so they can be removed from his body.

In another form of dialysis, called hemodialysis, blood is removed from the body, cleansed of wastes, then returned to the body. But because he's so young, Jayden doesn't yet have enough blood for hemodialysis.

In fact, Jayden is the youngest dialysis patient at Fresenius Medical Care. In the past, pediatric patients have had to go to Kansas City for specialty kidney care, but Wichita now has a pediatric nephrologist, Michelle Stuart Hilgenfeld.

"This is the first time Fresenius Medical Care has offered services to somebody this small," says Teresa Robben, clinical manager. To celebrate, the dialysis center threw Jayden a birthday party earlier this month. He turned 1 on June 5.

The Woydziaks say Jayden was in the hospital for the first six months of his life. The first night home was overwhelmingly scary, but "He's a piece of cake now," Janelle says. "He usually just falls asleep when we start" the dialysis. He is unhooked from the machine when he wakes.

Having a child with a medical problem can be overwhelming, the Woydziaks say.

But "what seemed like the end of the world really isn't," Janelle says.

"We had lots of people around helping us," Dan adds. "I don't know how we'd do it without family."

But they've learned to relax and enjoying parenting.

Even when their kidneys aren't working, children "don't break," Janelle says. "They're pretty tough guys."

Reach Karen Shideler at 316-268-6674 or kshideler@wichitaeagle.com.

http://www.kansas.com/188/story/444324.html

[donnia]

Wow!  Bless his heart.  What a tough little fellow.

[stauffenberg]

It is really tiresome to read yet another example of how the healthy majority likes to view the situation of sick people: "These unfortunates start out with a problem, but by golly, after the initial shock, everything turns out to be just fine."  Of course the truth is exactly the opposite, since diseases naturally get worse over time.  This child and his parents face a life of horror dealing with retarded brain development, renal dwarfism, uremic bone disease during the very period the bones should be growing, repeated transplants and transplant failures, long periods of living death on dialysis, and ultimately, premature death.  If the child had never come into existence, the net balance of misery and joy in the human world would have been much more positive, even counting the value of all the love the parents feel for the child.

[Hemodoc]

My dear Stauffenberg,

I am sorry, but for some of us, life is precious, suffering or not. I personally am quite thankful that my God and my creator has granted me life to use for His purpose.  I pray that this child will be able to overcome the many challenges ahead.  At least he has one point at the start very much in his favour: dedicated parents and a medical team that will give him every opportunity.  Yes, life is precious, whether "normal" or disabled, life is very precious.  Just my opinion.

Peter

[stauffenberg]

I wouldn't deny that absolute respect for existing human life, when the people who live that life want to live, is the foundation of all morality.  However, as evidenced by the high worldwide rate of suicide, which is especially high among the chronically ill, many people find their lives more a burden than a pleasure.  I doubt that a patient paralyzed from the neck down and suffering from intractable pain would find his life precious after he had gotten bored with counting the cracks in the ceiling above him.

[Zach]

I doubt that a patient paralyzed from the neck down and suffering from intractable pain would find his life precious after he had gotten bored with counting the cracks in the ceiling above him.

Except this story is about a child with chronic renal failure, not a patient paralyzed from the neck down and suffering from intractable pain.
Get real.
 

[stauffenberg]

Ah Zach, where would I be without the critical comments of my old nemesis! 

While renal failure might not be as bad as total body paralysis, the fact that renal patients have a suicide rate many times higher than the rate for the healthy population shows that there are many in that group who find their lives as unendurable as though they were completely paralyzed.

[monrein]

Stauff, you are so right. However, I also believe that you are quite wrong.  All of us who are born and face the struggle that is life, harder for some than others, have the option, when and if life becomes unendurable, of ending our struggle.  We are a community of ESRD patients here, all of whom have faced much and all of whom still have major struggles ahead.  Some of us have been dealing with illness since birth, others were luckier.  This child will hopefully find his purpose and hopefully also some pleasure as he makes his way in the world.  There are many types of burdens to bear and a good outlook can definitely mitigate the weight of any burden.  When the weight becomes too crushing each individual will then face a different set of choices.  I do believe that life has always been thus and will likely remain thus. 

You say that you have absolute respect for existing human life when the people who live that life want to live but yet you continually characterize the renal life as "long periods of living death on dialysis" and other quite extreme descriptions.  NOT MY EXPERIENCE.  Most of us here still value our lives, as constrained as they might be, and choose to continue making the most of them and the relationships that connect us to a larger reality.

I'll say it again.  If you describe your own  experiences with ESRD in the most horrific of terms, you would have nothing but my empathy for your torture as you feel it but to project a blanket description of something on to all of us is surely missing the point of individual agency and diversity in the human experience.

I also completely disagree that the healthy among us are all part of some global conspiracy to minimize the extent of our struggle.  Again, that is simply not my experience.

[stauffenberg]

A large part of the problem with people being brought into the world already doomed to terrible and incurable physical suffering is that life can become a trap not easily escaped, even by those who desperately want to escape.  Irrational instinctual drives to continue living no matter how hideous the life quality becomes can often paralyze the rational desire to bring suffering to an end, stranding the patient in a terrible limbo.  That is why the medical-legal system in the Netherlands deserves to be complimented for its humanity and foresight, since 8% of all infant deaths there are the result of euthanasia by physicians who act to protect the child from falling into exactly that kind of trap.  A major use of this pro-active euthanasia is to end the life of infants born with extreme cases of spina bifida who would be forever condemned to a life of intractable pain.

It is a facile mistake to slide from the fact that the right of an adult to continue living if he wants is sacred to the assumption that what is sacred is life itself rather than the choice to live.  It is autonomy which deserves to be respected, not bare existence, no matter how horrible it may be.

A large part of the reason why people have difficulty thinking sensibly about these issues is that they are obscured first by religious superstitution, which holds that life belongs to some invisible Nobodaddy in the Sky who will burn you forever in a giant frying pan if you make a rational choice to end your suffering before he says so.  Perhaps, to adopt the religious way of speaking, when Old Nobodaddy (William Blake's term) lets your life become intolerably miserable, he is telling you to end it, and wonders why you are so foolish as to continue living despite his 'message.'  The second problem is that people fear death and terrible suffering so much that they erect huge barriers to thinking seriously about these problems, and prefer to comfort themselves with any illusion or illogic rather than having to confront them honestly.

[monrein]

I don't really disagree with anything you say here and I do believe that medical technology can trap people and I also admire the Netherlands' approach to these issues. I do think that choice is the paramount issue but what is also striking to me is how many "disabled" people value lives that others, including yourself, may characterize as "bare existence", "torture" a "living death" etc.

I am not approaching this issue from a religious standpoint and I've often said that we, as a society, seem to afford our pets more consideration in the avoidance of suffering than we do our fellow humans, but that being said, how are we respecting autonomy of the individual if we end their lives  as babies because we think that their lives will be too difficult.  I don't believe that you have the monopoly on thinking about this "honestly" or even rationally.  I, personally would choose suicide, should my life become too burdensome to me and I am not afraid of death, nor am I too cowardly to do it although it would grieve me tremendously to cause pain to those who care about me.  I think however that they would understand and forgive me.  I don't think it is "facile" to go from thinking about the right of an adult to choose living despite hardships, to thinking about the preservation of life of babies who might want to make the same choice if allowed to grow up. 

I also think that you neglect to include in your philosophical approach to this issue of what is intolerable suffering, the huge individual differences between people and what they can bear or how they experience things.  In another post you describe your biopsies as tantamount to being "raped".  Others, including myself, didn't even spend a night in the hospital and conversed with the doc during the procedure and took no pain meds afterwards.  That's not to minimize your experience or to say it's invalid.  It sounds awful.  You had your permacath for years and liked it.  I detest mine and want it out asap.  Some are terrified of needles, I'm not bothered.  If it comforts you to believe that people who think differently than you do are not being honest with themselves or are resorting to illusion and illogic there is not much I can say but I remain happy to be still struggling with life itself as it presents itself to me.  When I was on dialysis the last time I had many conversations with friends who felt they'd kill themselves should they have to face at 26 what I did.  I respected their views but they were not valid for me.  Not even a little bit.  I also believe that if a person decides they've had enough they ought to be able to end their suffering in a dignified and painless way and obtain medical help to do so.

[pelagia]

I have really mixed feeling about discussing medical ethics in the context of individual cases.  Can any one of us not worry about this child or imagine the pain of the parents as they deal with this child's complex health issues? 

Ultimately, policymakers are tasked with developing guidelines that will affect individuals.  They have difficult jobs at best.  We can look to the medical-legal system of the Netherlands as one model for medical ethics, but let’s not forget that the Netherlands is a small, relatively homogenous country of about 16 million people.  That is less than half the population of California.  Like many states in the US, California is characterized by considerable ethnic, racial, religious and political diversity.  The challenges of developing ethical guidelines in the U.S. are almost certainly far greater than they are in the Netherlands.  And yet we have people who are willing to tackle these tough issues.   Hopefully some of them have found their way to this site and are learning from the first hand experiences of this community.

The balance of misery and joy in the world is unknowable except through the lens of our own perceptions.  To state otherwise is opinion, not fact.

As far as the statements made about suicide rates, let's revisit those numbers for the sake of the record.  While many articles through the 1990s reported high rates of suicide for people with ERSD, the community questioned some of those estimates based on methodology, and recent authors have noted that those earlier studies failed to differentiate between dialysis withdrawal and suicide.  In a recently published study of ESRD statistics for the US population by Kurella et al. (2005) the authors state: “In 1990, the ESRD Death Notification Form was revised, permitting separation of withdrawal from dialysis from suicide and other causes of death.  Accordingly, recent data from the United States Renal Data System (USRDS) indicate that suicide occurs at a rate of two deaths per 10,000 patient-years, suggesting only a modestly increased risk for suicide compared with the general population."  These rates are “similar in magnitude to the risk for suicide associated with other chronic or debilitating illnesses, including HIV infection, chronic lung disease, and stroke.”  Suicide remains relatively rare as a cause of death in the US population.  For comparison, over 20 people per 10,000 individuals die each year from heart disease (CDC).

Kurella et al. (2005) also stated: “The presence of ESRD tended to accentuate existing national patterns of suicide according to age, race, and geographic region but not by gender. These observations suggest that ESRD acts to exacerbate a preexisting vulnerability or tendency toward suicidal behavior among certain high-risk groups.”  The risk factors identified for suicide are “age > 75 yr, male gender, white or Asian race, geographic region, alcohol or drug dependence, and recent hospitalization with mental illness…"

On a positive note, they also included this statement, “The absence of an increased risk for suicide in adolescents with ESRD may be attributable to the improved survival of this subgroup and the higher probability of transplantation for adolescents with ESRD.”
 
The risk factors for withdrawal from dialysis differ.  “Withdrawal from dialysis occurs in 9 to 20% of ESRD patients and is more likely to occur in older, white, female patients. Several studies have also demonstrated that patients who withdraw from dialysis have a high burden of illness, including malnutrition, physical impairment, and a high frequency of dementia, malignancy, and other chronic diseases."

The Kurella et al. (2005) article can be found at:
http://jasn.asnjournals.org/cgi/content/full/16/3/774

The CDC statistics are at:
http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_10.pdf

[stauffenberg]

I have long thought that the distinction between 'actual suicide' and 'suicide by withdrawal from dialysis' in the dialysis population is nothing but a patently idiotic attempt by society to cover up hard truths with a fig leaf.  Suicide is a profoundly revolutionary act, and when committed by an incurably sick person, it represents a massive criticism of the entire 'establishment' of drug companies, doctors, medical science, and social control.  Of course these forces will conspire to re-define the numbers in a foolishly arbitrary way to make the suicide rate seem smaller.

But anyone can see through this transparent effort.  Suicide can be a very difficult act to commit, because it requires the courage to overcome one's irrational, instinctive desire to live.  Stopping dialysis provides a very convenient way to avoid having to confront the frank decision to kill yourself right here, right now, such as you would have to do if you aimed a gun at your heart, since you can sort of temporize and allow yourself to slip away.  It also has the advantage of permitting people to lie to themselves and say they are just withdrawing treatment, not actuallly committing suicide, for which the invisible ghost in the sky will punish them.  So dialysis patients naturally prefer in many cases to use the simple and easy weapon they have been handed by their disease -- withdrawal from dialysis -- to commit suicide rather than using a gun, a rope, stones in the pocket for jumping off the bridge, or a drink of cyanide, for which the ingredients are hard to come by.

So stopping dialysis is suicide plain and simple, just as if someone decided to kill himself by stopping eating or drinking, or putting a plastic bag over his head.  In all these cases, a person deliberately chooses to end his life by preventing something reaching him from the outside world which he requires to continue living.

Kurella's whole article offers interesting support for the theory that many people find living on dialysis worse than death. If withdrawal from dialysis is counted as suicide, as I have argued it should be, then the suicide rate for dialysis patients is approximately 100 times higher than that for the general population. (Kurella, 774, 777)  Even if we arbitrarily subtract those who withdraw from dialysis from the suicide statistics for dialysis patients, the suicide rate for dialysis patients is still 84% higher than for the general population. (Kurella, 777)

[pelagia]

If you are going to alter the group definitions for the ESRD statistics, then you have to do the equivalent for other demographics (non-ESRD, other major diseases) otherwise you are comparing apples and oranges. Cancer patients may choose to forego chemotherapy or other treatments that would otherwise prolong their lives because they decide that it's the best alternative for them.  I imagine that the same is true for other severe or debilitating diseases.  In any case, the results of the Kurella et al. study suggest that a person who has ESRD and independent risk factors is at higher risk for suicide.  In my opinion, this is something the medical community, and others who contribute to the care of those with ESRD, should know.

[stauffenberg]

I think the case is clearer that dialysis patients foregoing dialysis are deliberately committing suicide than with cancer patients foregoing chemotherapy or radiation therapy.  The dialysis patients know in advance they will be dead in a week to a month, whereas the cancer patients have a real chance of spontaneous recovery despite foregoing treatments.  In fact, some cancer treatment theory now recommends not trying to eradicate the cancer, which tends to do more harm to the body than it can endure, but rather, just trying to manage it and have the patient live with it through more passive treatments.

A large category of suicides involve people voluntarily cutting themselves off from what they know they need in the outside world to stay alive.  People decide not to take in food or water, or they decide not to take in oxygen, cutting off their access to it by drowning, hanging, or cyanide, which prevents the cells of the body from utilizing oxygen.  Deciding to cut yourself off from something special in the outside world you need to access to survive, such as dialysis, is no different and is still suicide.

I don't see how I am playing with the statistics defining the group of ESRD patients.  I include them all, and I define suicide the same for all of them as I define it for healthy people, which is voluntarily cutting yourself off from whatever in the outside world you need to keep you alive.