Consider this your disclaimer that this post isn't roses.....
"Either life is always, and in all circumstances, sacred, or intrinsically of no account; it is inconceivable that it should be in some cases the one, and in some the other."
~ Malcom Muggeridge ~
I don't know if you have heard of this story or not. A friend on Facebook shared it some time ago, I posted about it in an old blog and now I am here. I was reminded of this story yesterday morning. Though I have also never forgotten about either of the two stories I'm about to share. Both broke my heart.... We have come a long way with special needs children but we still have a ways to go.
"Today Baby Doe Died
Today was the day in 1982 when Baby Doe died in a maternity ward in a hospital in Indiana. He died because his doctor advised his parents that they could “do nothing.”
As covered in this post, Baby Doe was a child born in Bloomington, Indiana. He was born with a disconnected esophagus–a condition that at that time could be successfully repaired 90% of the time.
But his doctor, Walter Owens, advised the baby’s parents to not consent to surgery and instead let him die. He advised them:
That it would still be a mongoloid, a Down’s syndrome child with all the problems that even the best of them have. That they did have another alternative which was to do nothing. In which case the child [would] probably live only a matter of several days and would die of pneumonia
probably . . . . Some of these children . . . are mere blobs.
That was how Dr. Owens recounted the advise he gave Baby Doe’s parents in sworn testimony to the U.S. Commission on Civil Rights. Dr. Owens, himself, “had little experience with mental retardation, but he had a niece with a retarded child, and it seemed to be his view (though not necessarily his niece’s) that this had ruined his niece’s life.”
Two other doctors had advised to transfer the child to a hospital in Indianapolis for surgery. Dr. Owens reminded the parents that the surgery “could do nothing about the Down’s [sic] syndrome. *** ‘However, he informed the parents, ‘you do have an alternative,’” advising they could refuse consent for the surgery. Regarding his niece’s child with intellectual disabilities:
Obviously this has colored my thinking on the survival of such children. I believe there are things that are worse than having a child die. And one of them is that it might live.
was crying from hunger, and his lips were parched from dehydration. His ribs were sticking out, the result of respiratory strain caused by the tracheoesophageal fistula. That afternoon, when the stomach acid started corroding his lungs, he had begun to spit blood.
Families petitioned to adopt Baby Doe and a lawsuit was brought to require medical care be provided. Dr. Owens testified in defense of his advice to let the baby die and other physicians testified that medical care should be provided. The court found:
Mr. & Mrs. Doe, after having been fully informed of the opinions of two sets of physicians have the right to choose a medically recommended course of treatment for their child in the present circumstances.
The court’s decision was concurred with by a Child Protection Committee hearing. A subsequent hearing was held to declare the child neglected under state law, but:
the Court finds that the State has failed to show that this child’s physical or mental condition is seriously impaired or seriously endangered as a result of the inability, refusal, or neglect of his parents to supply the child with necessary food and medical care.
[Let that sink in for a moment].
The Indiana Court of Appeals denied an immediate hearing to review the decision and the Indiana Supreme Court denied a petition for emergency relief to order medical treatment.
Baby Doe died six days after he was born in 1982 on today, April 15. Cause of death:
Chemical pneumonia, due to the regurgitation of his own stomach acid.
Happy birthday, Baby Doe
Update: In October 2014, I was able to bring a measure of justice, however small, to the town where Baby Doe was born and died, as relayed in this post.
"He died, though, not because his esophagus wasn’t connected.
He died because he had Down syndrome."
Continued from a follow-up link,
"Today (April 15th, 2012) would have been Baby Doe’s 31st birthday. But, Baby Doe had Down syndrome and his doctor believed some individuals with Down syndrome were “mere blobs.” The doctor’s medical advice to Baby Doe’s parents was that they should let their child die from lack of care. I wrote about this in 2010. Re-reading the column, I was reminded of then-current examples of these views still being expressed and practiced. Lest we think this attitude towards withholding care to babies with Down syndrome is long past, just in 2012 academics argued in favor of “after birth abortions,” citing the high termination rate for Down syndrome to justify their position. In 2014, Richard Dawkins, noted evolutionist advised that it would be immoral to give birth to a child with Down syndrome if the parents knew beforehand.
Lest we forget, let us remember today: Happy Birthday, Baby Doe."
Baby Doe by Steve Taylor:
Unfolding today, a miracle play
This Indiana morn
The father, he sighs, she opens her eyes
Their baby boy is born
"We don't understand, he's not like we planned"
The doctor shakes his head
"Abnormal", they cry and so they decide
This child is better dead
I bear the blame, believers are few
And what am I to do?
I share the shame, the cradle's below
And where is Baby Doe?
A hearing is sought, the lawyers are bought
The court won't let him eat
The papers applaud when judges play God
This child is getting weak
They're drawing a bead, reciting their creed
'Respect A Woman's Choice'
I've heard that before, how can you ignore
This baby has a voice
I bear the blame, believers are few
And what am I to do?
I share the shame, the cradle's below
And where is Baby Doe?
Where will it end? Oh no, no
It's over and done, the presses have run
Some call the parents brave
Behind your disguise, your rhetoric lies
You watched a baby starve
I bear the blame, the cradle's below
And where is Baby?
Okay, Special Momma, that was in 1982, that doesn't apply to today. Or does it?
June 18th 2014. Any other day..... Except for all of those who followed the story of Annie. Better known as Annie Golden Heart on Facebook. She died that day. She was just over two years old. I had tears for a family I'd never know the days leading up to her passing and especially the day she did....... The pictures the family shared of her the days prior and the day of her passing were so sad and heartwrenching.... Yet doctors made it so....
Want to know why she died?
"Due to Annie also having Down's syndrome, she will not be placed on the heart transplant donor list. This is the only thing that can save her." source
Yes, you read that right. She died in 2014.
What makes this okay? Seriously.... What makes this okay? This should never be..... There are many with Down Syndrome and other disabilities who are "productive to society" just as anyone else. There are many "normal" people who are not productive at all. If this is the mindset those in the medical world and elsewhere have then maybe those with disabilities are more deserving of life than those who don't have. The rationale is that organs like hearts are so hard to come by, they should be saved for those Americans who will grow up to be “productive citizens” with “normal” lives. Well maybe those "normal" people who aren't productive at all should then be barred from any life saving intervention due to the same standard put on those with disabilities....
Disagree or agree? Harsh? Keep reading....
This was a really good article written about the injustice in the medical world.... http://marcusjonesdirect.com/precious-baby-died-today/
"Annie is not the first. America has treated human beings as three-fifths a person before. This time it’s not about skin color. This time a person has been discriminated against based on her genetic constitution. And this intolerance has been going on for years. There are many others besides Annie. Magazine articles and online videos abound, chronicling the systematic discrimination of people born with exceptional abilities. It is a problem that finds its roots in the “Final Solution.”
Men, women and children with Down Syndrome were among the first people exterminated in Hitler’s Nazi Holocaust–all in the name of “mercy.” Atrocities and abominations, carried out in the name of medical science, eviscerated an entire people with the steeliest resolve. “They’re not worth it,” the haters tirade. “They diminish us all!”
But in fact, who’s really the one in need of the heart transplant? Pervasive, long-antiquated prejudices are the knife-blade at the throat of America’s humanity." source
He went on to say,
"She died today, not because her heart failed, but because ours did. Our heart: chambers calcified with bigotry and hubris. Our heart: arteries clogged with a self-consumed penchant to play God. Don’t point at her little heart. The blame is squarely on ours.
She died today because in our minds she wasn’t “person” enough to deserve a new pump. She wasn’t whole enough to deserve a new heart—not a child enough to warrant a fighting chance."
Have you ever thought someone would never make it in life? Would ever be a "value" to society? A "Lazy leech" who will never succeed? Ever said anything like, "That r****d will never be worth anything!" A child who will never be productive because of _____ mentality? (Fill in the blank) "That kid is too ugly to get anywhere!" or any similar thoughts? Ever said them? Even thought anything like that?
If so, you are part of the problem.... I don't mince words...
Remember where Jesus said in Matthew 25
Think about this...... Yet I guess if people are going to kill Jesus for what he believed, what difference does it make if we kill the disabled..... Right? Is that not the mindset here? Is that the mindset that so many who have power in this country and across the world have? What are we going to do to change this? Do you really want to change this? I truly think we all can make a difference.
This may not be 1982 or even further in the past when children with disabilities were frowned upon and worse but even now children with special needs are often seen as helpless, worthless, different, ugly, etc. More and more are finally starting to see just how much joy and happiness those with differently abled abilities can bring to this world but we still have a long way to go. Just look at the case of Annie...... She wasn't even given the chance for a heart due to the fact that she had Down Syndrome. Her final days told the tale of what having a broken heart did to her.... It was awful....
Is Down Syndrome really THAT bad? Is any disability really THAT bad that WE have the right to play God?
These poor children suffered because a doctor let it happen, and in fact decided it should be. Does that make you angry??? It still happens!!
We get mad when our child doesn't make the cheer squad, we get mad when our child doesn't get the AR party by one point simply because they refused to read. Yet we don't get mad about this?
Oh, right.... It's not your child so not your problem, right? Come on, say it.
"Oh but Special Momma, I can't read this anymore! It's too heartbreaking!" What about the poor families who face this?!?!?! What about the children in this world who are suffering because they aren't loved, or wanted or because they have a disability that our own humankind decides they have no rights so just let them die!
Those in prison for violent crimes, for murder, for molesting kids, for killing kids, for rape, for all sorts of horrific crimes have more rights then these children with disabilities do JUST BECAUSE THEY ARE DISABLED!
WHAT IS WRONG WITH THIS PICTURE?!?!?!
Yet all we do is sweep it under the rug because it's not our children, or your child or your niece/nephew or whatever. It's too depressing to read huh? Well then do something about it! Don't just ignore it! Yet look at Stephen Hawking..... We didn't hear stories that he should just die. Why? Is it because he was a scientist and rich? Seriously.... Why not? Yet we can tell others to die? Even those less "disabled" then he was? Why? Why is it okay for him to continue to live as long as he did yet a child with Down Syndrome or other disability is forced to die in a corner because of his/her disability? Or a child be refused a heart because of hers? Why is it okay in ANY case to be this biased?
You know how many kids are stigmatized, discriminated against and outright given a death sentence every year in this country? Supposedly the greatest nation in the world and we give more rights to eagle eggs than we do our own. Child molesters and abusers have more rights than children do in this country!
Shame on those parents who "let their child die because they don't want to deal with them"! Shame on those doctors who refuse equal care to a child just because of a disability.... Shame on the public for sweeping it all under the rug..... Shame on any politician who is okay with this. Most of all, shame on anyone who has the power to decide they can play God.....
Now, it's not just kids this happens to.
Remember Terri Schiavo?
March 31st, 2005, not long after her feeding tube was removed by order of a Florida judge acting at the request of Schiavo's husband that his wife be allowed to die. She was 41 and had spent nearly half her life in a vegetative state after suffering a cardiac arrest in 1990, causing a severe lack of oxygen and brain damage. source
The final order for the feeding tube to be removed was commenced on March 18, 2005, and Schiavo died on March 31, 2005. 13 full days.
The debate was who decided in the "right to die" case and also if she even wanted to die, despite her condition and likely not able to comprehend what was going on due to the brain damage.
It's not just children that get yanked into this..... There are other cases of this issue with ethics in pediatric and adult cases. It's worst in geriatrics. Yet who are we really to play God?
It's complicated sometimes though too..... There are cases where you have a patient who is going to die anyway..... Many families are forced into hospice and DNR orders due to no other options... I'm not talking cases like that here.
I'm talking cases where willful treatment, especially a procedure or treatment that allows for normal life, is denied to someone simply due to a disability. It doesn't matter if it's the family or physicians refusing care, it's still denying care. It's immoral and unethical. It's when you tell a family that the only reason they can't get an organ transplant is because their child is disabled. It's when you decide that just because a baby is going to be born with Down Syndrome, that they should die alone in a corner crying. It's when you decide to drown your child because they have Autism. It's when you refuse to help an infant because it has spina bifida that you are inhumane and unethical... (Another case in the Playing God in the Nursery book.) Another source
Now, what about cases where insurance is who denies care? Where they refuse life saving treatment? It's still the same to me. Unethical and inhumane ways to play God. Let's look at the situations where a patient can't afford care. Here's a good start. Another one.
"When a patient says, “I can't afford that,” what is a physician to do? Urge the patient to proceed despite the expense? Compromise the standard of care to reduce costs? Decline to provide substandard care, and therefore any care at all? Attempt to manipulate reimbursement rules or falsely underbill for the patient's benefit? These issues may be ongoing, since patient concerns about cost are likely to resurface at costly junctures in the care plan.
A process of negotiation may ensue in which the physician attempts to justify the needed services and the patient pushes for alternative approaches that cost less. At stake for the clinician are concerns about lowering the standard of care, exposure to liability, and professional insecurity about straying from well-trodden clinical care pathways that are generally recommended. For the patient, the stakes are concerns about financial and physical well-being."
That's if the patient even seeks care.... Often they wait till it's an emergent situation and wind up at an ER. Now that's expensive..... And also likely subpar care because of the lack of medical history knowledge to work with and more.
Shall I go on?
On the flip side of this topic, this was a good article talking about rationing in the medical world.
"Rationing of health care is necessary, unavoidable, and ethically complex. The levels at which health care is rationed, and the transparency of rationing, are important structural considerations in creating a sustainable and just health-care system. Ethical rationing requires deliberate choices guided by reasonably applied principles and fair procedures. How rationing occurs is important because it not only affects individual lives but also expresses what values are most important to society. We live in a world in which need is boundless but resources are not—and medicine is not immune to the consequences of this reality."
More on my take with insurance...
So often parents who have kids with medical and or psychological issues fight alone. Really. We do much more than just care for our kids. We do more than just doctor visits. We do more than surgeries. We do more than research on what our kids are diagnosed with. We do more than drive hours each way for specialists. We fight battles we should never have to fight just to assure or children live. Welcome to the world of insurance, where sometimes they would rather have our children die than to care for them. No future for humanity without the kids of today no matter the diagnosis.
A mom, Elena Hung shared this, "Fighting insurance was not a battle I should have had to take on. I hope that by me being the advocate for my child, it will prevent others from having to go through this." - Lisa Begner, mom to 5yo with complex medical needs.
"Parents of kids with complex medical needs always speak up. When our kid is sick, we speak to doctors. If they can't get what our kid needs, we speak to insurers. If they won't help, we speak to legislators. Little Lobbyists never give up. Together, our voices are louder." That was shared in light of this post. Yet some would rather see them die anyway....
Obviously insurance is more worried about profits than life. Hospitals and clinics are sometimes just as bad.... Case in point in this entire post.... So many want to just play God....
Where's the outcry over equality there? Oh that's right, the more money one has, the more silent everyone becomes no matter how unrighteous or evil a deed is..... Welcome to politics.... Welcome to cliques.... Welcome to pecking orders...... Welcome to the disabled especially being at the bottom of the pole...
Yet those in prison still get all medical care handed to them and we fit the bill for it all the while we allow people, including veterans to suffer and or die needlessly. Criminals have more rights than those who need care the most!
WHAT'S WRONG WITH THIS PICTURE?!?!?!?! Rationing or not, to tell people outright they do not deserve ___ because of a disability is just not right.......
Doctors sometimes forget the oath they took....
Hippocratic Oath- Modern Version
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
(People of poor or deteriorated vitality; especially feeble from age. Those weak of mind, will, or character and or not solid or stable,)
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
One comment made on Facebook said this, "I think the problem isn't whether the healthcare system is for profit or a state system. Arguing about that is missing the forest for the trees...when the real problem is ABLEISM. The very fact that we seem certain lives unworthy based on criteria like IQ, method of communication used, ambulatory or nonambulatory, blind or sighted, deaf or hearing. The fact remains that no matter who pays for medical care, we deem certain lives unworthier than others. That's the core issue. It's antithetical to justice, compassion and humanity, and it rots a society from the inside. I feel really strongly about this issue. There are still laws on the books that allow a DNR to be placed in a patient file without parental consent if a child's care is deemed futile. Just straight up disrespectful to the families of ill children. Are there some futile cases, yes. Still wrong not to involve the parents at all...and then there's the issue of such orders being placed solely on the basis of a genetic diagnosis instead of the individual symptoms of the patient (i.e., trisomy 18). It's just so much wrong with this system." Suzi W.
The consolation in all of this I guess is at least once they pass at the hands of those who wish to play God, they really get to go to God and will live in peace at paradise eternally....At least there mankind won't eat their own......
"When you look at these decisions at the core, the most devastating, chilling and horrific tragedy is not really the death of the babies because at least you know they're going to heaven after these atrocities are committed: it's the complete lack of concern and sympathy of the parents, especially the mothers. Never before in history has there ever been such an attitude of complete disregard toward babies by the very people who should care and protect them the most."
~ Unknown - A pastor's wife ~
~ Unknown - A pastor's wife ~
~ Special Momma ~
"However low it flickers, or fiercely burns, life is still Divine flame which no man dare resume to put out, be his motives ever so humane and enlightened."
~ Malcom Muggeridge ~
~ Malcom Muggeridge ~
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