This morning I listened to a pediatrician and medical intensivist talk about the ethics of spending a couple of million dollars for one baby with a one-of-a kind (very rare) disease, in this case a neuromuscular disorder limiting normal breathing ability.
These babies might receive a series of doses, some intrathecally, (meaning they stick a big needle into the back of your spine; often inserting it into the base of your neck) – for therapy that costs $250K per shot. Not infrequently needing those drugs for the rest of their life, that they might live and ‘thrive’[1].
This has fostered the development and use of orphan drugs funded largely by philanthropist millionaires who need a tax break. Often the same ones putting pollutants in the environment, remember they are, even now, making money hand over fist and don’t otherwise know what to do with it.
So they do like Berkshire Hathaway- make their abundance grow further with investment and create[2]charities (and museums).
Really, is philanthropy- and those other formalized tax avoidance schemes that earmark millions donated for specified focus, really helping our nation’s[3]collective need for health or longevity of the whole, meaning the 85% middle?
Think “charity”, and know there’s a ‘victim’ with a sad story, as well as a need for gala. Image the economy created by (non FDA-proven) treatments requiring many skilled technicians and a mountain of plastic, that cost millions and only partially alleviate a toddler’s disability. And then, once one thing shifts, creates new problems needing solutions?!
The victims, in this case are human children with shortened life spans due to severe and tragic dis-ease.
Seeing a child as creature of the hospital is sad and disturbing – they are usually too pale and overly quiet. Many go on to lead ghosts of lives (according to my definition of thriving) with permanent cortical damage, reduced cognitive intelligence(s) and flattened affect.
Treatments stemming from prematurity and cancers requiring chemotherapy, have many ethical issues for me, but this isn’t about them. It’s about the infants that never left the hospital in the first place, since delivery or shortly after and still receive basic life prolonging care after the age of two. What lives they do lead are centered on tests, procedures and treatments.
I argue that this is a form of torture, not sanctuary.
I dream of a world where babies with low APGAR scores are treated with compassionate care once initial vigorous resuscitation efforts, not including intubation, fail.
While every baby is sacred to its family of origin, meaning a gift and blessing, it is fallacy for society to view any particular baby as sacred.
That any one baby represents “a hope” or future savior (that no one else can do), is frankly absurd[4].
I wonder, excepting the (vanishingly) small percentage of children that become remarkably productive members of society, such as our theoretical “president[5]” everyone keeps talking about, shall we ask the 40-60% or so of those others, who don’t do so well, how mixed are their feelings?
While no one wants to decide not to advance care on a longed for infant, sometimes it is the right choice to make. But did you know our laws demonize and castigate those who might choose a course of non-intervention, instead opting for comfort measures?
Furthermore, it’s statistical fact that chronic hospital intensive childcare causes Adverse Childhood Trauma (ACE) score elevation. High ACE scores show up as strained families with consequential struggles, both within and without.
Of course they, the families themselves can’t really answer, they know no different than their own existence. They do make decisions reflecting how questions are subtly asked and their perception of societal expectations.
*****
Imagine yourself from the in-utero fetus’s perspective.
Floating like a sodden sponge, you exist in a lulling vibratory space with beating hearts and muscles twitching. You have no breath and no sight, other than perception of light and dark.
There are no attachments but plenty of emotions,[6] consciousness lies heavy. Neurodevelopmental pathways unfold in space; undisturbed by specific sensation.
All of your being is made to be ready for first breath- when your spark comes to life – outside in the cold light. Soon it will animate you sparked when your ribcage widens- as you emerge from the high-pressured birth canal.
In utero,there are no visualizations- no image receptors activated, no way to discern. Nor are there specifics or meaning to the sounds of words; nor images of people to associate with mother’s emotional shifts and changes.
Yet as baby you are finely attuned and programmed to be in synch with your mom’s insides; living her ‘daylight’ activities as well as tossing and turning when she dreams. Your sense of ‘clock’ is cultivated.
With this there are patterns forming epigenetic changes.
There might be a sense of wonder[7]before birth, or recoil from an environmental harshness. This record of sensations develops gradually; becomes more known in baby’s body soma as imprinted patterning.
Being in-utero, is essentially the state of pure “beginner’s mind”. A mind that is fresh, open, and curious is otherwise identical to that cultivated in “A Course of Miracles”, and what I have experienced through the practice of Vipassana meditation[8].
You as that infant, fetus yes, but as loved baby too, are able to live with intensive home (not ICU) care after about 35 weeks gestation. Though many have difficulty suckling and feeding. As fetus, you have no context for what comes into your energetic “field”- for example aural, visual, or tactile sensation; you “know” no-thing. It takes being born to (literally) make more sense of things.
Sensations themselves, such as pain, do not produce fear. Fears are taught by parental responses to infant- by their actions, inactions, and consequences.
With birth, that first inspiration, when the ribcage widens mechanistically (causing a veritable ‘spark’), everything shifts again, but maybe not pleasantly, if there is an obvious deformity or failing.
What protoplasm expects bright lights, gleaming steel, and beeping noises, after the experience of womb’s fuzzy outlines?
It is a fact that you are born not “knowing” whether you are perfect or not. There is no thing as ‘male’ or ‘female’. We connect with our eyes and hearts- to whomever feels coherent and welcoming.
For the infant with ‘deformity’ this is quite a special training[9].
*
With repetitions and over time,
You’re greeted
By smiling,
Uniform and professional faces of
Doctors and nurses who treat you
Like a king (or queen) telling you,
You’re a “very special” baby.
*
Those words soothe them,
Especially when they are said aloud. It helps feel compassionate and
Most of all thankful-
They aren’t you being teacher.
*
They put the needles in, for
Your a test or treatment,
Sending you now off to sleep.
*
Then you awaken with new stiffness and pain-
To a new wound needing dressings,
Treatments,
And interventions.
*
Before and after each time of treatment,
Momma rallies (she’s martyr);
Dad gets angry,
resigns, or sometimes leaves the family altogether.
*
Family dynamics have their own flavor –
other children who then
Receive their ‘shortchange’ parenting.[10]
Somehow, it’s always the mother who gets ‘blamed’.
*
In time, you as the special child,
Learn to describe
What you want more of
in your sphere of possibility and vocabulary-
Quite well, and thank you.[11]
*****
Initially there is no fear associated with ‘pain’ of a procedure. But because procedures create wounds and wound healing (and sometimes infections and other complications), a cytokine or two get generated. That too becomes part of a learned pattern.
Instead of exploring a world with baby’s newfound, and parentally cheered (reinforced), senses of eyes, nose, lips, and toes, he or she is the focus of many worried faces and ‘friends’ in stark uniform clothing.
Girded by emotions of fear and other priming, the experience of pain enlarges in intensity and duration (even when no one is even touching them). At first the crying (infant) child is rewarded with attention; later rewards are for stoicism when they keep quiet and enduring.
Parents are usually quite responsive when their infant cries. Then infant receives extra holding- even as parent must surrender baby to the “doctor” for yet another procedure.
Notice, next time you are near to a misbehaving family, the control a young child exerts on their parents- especially when they are not “perfect”? Toddlers and younger, sense guilt- and make it work for them.
So you, as baby, are in a state of getting attention- that was always your wish. Our mirror receptors thirst for engagements.
Parents want a reflection of their ideal and must show theirworld they’re trying[12]to be proper denizens of Lord Farquad’s kingdom, by subjecting these little beings to unique tortures- essentially punishing baby to ease their own consciences.
*****
Now look at the infrastructure of the institution of “medicine”. Sure we can quote the “WHO”, World Health Organization, and the Declaration of Human Rights and other policies that declare all children should be the recipient of modern medicine, but what are we really creating as a society, and more importantly for whom?
It is no wonder the laws are written to stifle dissent and to shame parents who decline such interventions. Now we know, using media and marketing with finely tuned neurolinguistic programming, that laws are bought and paid for by the plutocrats (those who own resources), what else can we expect?
*****
But what if, instead, you as baby were treated to compassionate and caring existence with invasive wounds and painfulness. What would you know other than the experience of tender loving care when water drips into your mouth when you are thirsty but can’t suckle? Please (re-)read “When the Spirit Lifts you and You fall down”, which was once required reading at Yale Medical School. There is more than one way to care for a being. All else is projection.
*****
It is reassuring to know
Deep in my soul
That a child with will to live
Will ultimately become well – and literally we’ll.
*
In other words, part of a ‘we will’,
Willing with another- not just in parallel
Whatever thatlooks like
Will be manifestation of both’s Dharma together.
*
Theoretical physics proves –Great ideas and principles co-evolve. It is not unusual for several groups to simultaneously reach the same breakthrough conclusions about a topic. Witnessing any given singularity will be seen according to one’s foundations. With clear minds and logic, many come to the same conclusions for the next step of society’s evolution. This has been the case so far anyway.
For that reason, there is always already someone out there in the world, ready to pick up your baton when you are ‘ready’ to lay it down – and with fresh zeal too.
So you and your spirit can freely go on to the next ‘adventure’- and your next incarnation that will no doubt be even “better”, next time[13]around.
[1]In this case, meaning for the clinician, being able to feed themselves independently or other activity of daily living, most of us take for granted. For the parent, the hope for living without near-constant attention.
[3]And by extension, our place as leader in the free world.
[4]Theoretical physics has proven and demonstrated that when an idea or time is ripe, it will contemporaneously manifest in several ways- especially if blocked or suppressed.
[5]Our leaders reflect their own constellation of values and karmic attachment; no more, no less – at least until we become more individually more leader-like. It is a truth, anyone meeting the tests of citizenship, can be president! Now we know that includes a person who has no experience in governance.
[6]emotions =energy in motion
[7]When mitochondria wake up, so does our will. Organs and parts of our brain come on line sequentially with predictable changes in neurochemistry (our ‘strap’ ependymal cells slowly defenestrate, then and only then, allowing proteins present in the ventricles, to enter a space of brain parenchyma). In our western world, with our fostered co-dependence, adulthood is delayed until ~age 30.
[8]It is ‘free’ to participate in Ven. Goenka’s Vipassana meditation course(s) (www.dhamma.org); one must sign up to go through an approval process, and then take time off from work.
[9]Normally, until now anyway, we learn to fear, and feign fear, with our parents (and the institutions they represent) in order not to be ostracized to the ‘desert’ of social exclusion. In centuries past that exclusion meant assured death. Despite the reality that survival is now nearly assured – both by our thriving economy and codependent society, we are still subconsciously and overtly motivated by those fears. As a rule, man will still go to all lengths to avoid being severed from his specific collectives.
[10]What are those demographic tendencies in the families with chronic needs?
Especially the ones worsened iatrogenically – meaning had complications from the treatments? Wouldn’t that be interesting research…oh wait, it has been done! Yet still we don’t freely allow families to decline care and yes, even to relieve that suffering humanely. This creates economic underclass– and thus the ‘need’ for more recipients of charity. (But then there are no accidents or mistakes; no matter their decisions, for them will be difficult lessons).
[11]Even when you ‘make’ it, there are many diagnoses of psychological ailments, needs for special attention- that proscribe your prospects. Most of these individuals do not benefit the society at large though they are ‘perfect’ for their family.
[12]until now, our worlds (meaning family and friends) have strict standards of perfect baby.
[13]As our reincarnations in the state of quantum physics occur simultaneously, the more we can joyfully surrender to G-d’s will, the brighter our whole lineage becomes; specifically and most directly affecting the seven generations before and after.
It is also true that the opposite happens with intentional reinforcements of karma, when we didn’t trust but forced and bullied to get what we wanted. Then the lineage darkens and contracts both forwards an backwards.
Yet, these infants are here to be unconditionally loved; even if briefly. Consider our spirit’s life’s purpose is to be at-one with another. That’s the reality -an experience, which happens, of which you are aware of (only) bits and parts, but then in review and 20-20 hindsight, we end up our lives getting closer to being in harmony (coherence) with our surroundings as we age.
Why try to force them to be different- if not to serve one’s fears and use them as ‘a crucification’- sacrificing decency for the actual treatment of another that is abominable, just because we can?! Perpetuating the coveting. Tsk tsk.
Keep up the delusion that you don’t believe in G-d in any way at all? Does the idea of the Voodoo bother you?
If there’s a g-d for one of us, there’s a G-d for all of us- possible. Let the little ones be cared for blissfully.
