Why Talk of “Distressed Babies” Has Me Distressed

When Tim Armstrong, CEO of AOL, cited the cost of “distressed babies” as the reason for cutting 401K benefits to AOL employees, he created a media storm by blaming sick babies for poor corporate governance.  Armstrong cited the million dollar costs of caring for two premature babies as the reason for needing to change employee benefits, essentially outing the private health information of a few of its workers (possibly against HIPPA regulations). He put the mother of one of those babies in a position of defending her daughter’s life and honor, and their family’s sizeable use of the benefits package they pay for through AOL’s employee insurance program.

It is much easier to blame babies and the women who bear them than it is to shine a light on selfish corporate leadership and our bloated, inefficient, for-profit medical system that often works on the rationale of doing procedures “because it can” instead of establishing criteria for action “because it should or should not.”  Extreme incidences such as this mask the underlying problems inherent in our “can do” medical system’s approach to caring for those who are ill, and hold a special lens for viewing maternity care.

I have not yet in the media coverage of this story seen a reference to the question of whether or not a “micro-preemie,” born barely at the age of viability, should undergo extensive lifesaving measures.  Some would call the procedures necessary to keep a five-month fetus alive outside of the womb “heroic measures,” but others could call those procedures “torture.”  Numerous needle sticks in veins that are so small they are barely visible to the eye, tubes in the nostrils and down the throat for months on end, electrodes and monitors attached all over the body, kept in a plastic box to maintain body temperature because the baby is unable to do that on its own, attached to a ventilator because it cannot breathe on its own, fed through a tube threaded through its nostril and down into its belly into an underdeveloped gastric system which is at high risk for painful and deadly infection, being so fragile that it cannot be held or touched for months are just some of the “heroic” measures that micro-preemies endure.

In addition to the efforts made to save the fetus, the mother often undergoes a cesarean section; a major abdominal surgery that puts her at risk for complications and infections and can jeopardize her health in future pregnancies.

Furthermore, the micro-preemies that survive into early childhood often suffer from ongoing health problems, learning disabilities, and behavioral problems.  Sometimes these problems are relatively minor and children grow to become healthy, productive adults.  Sometimes though, these children do not fare as well and demand constant, high-level care throughout their lives.  There is no crystal ball to tell the future and know which outcome will occur.

It is truly a miracle of modern science that a baby can be born so early and survive, but the doctors who make the decisions in the Neonatal Intensive Care Unit are not the same doctors who continue to treat the life-long illnesses and deficits from which micro-preemies often suffer, and they are not the doctors guiding the mothers through future pregnancies where they are denied Vaginal Births After Cesareans (VBACs) or suffer complications from the previous cesarean.  Previous cesarean has been linked to infertility, and by using surgical means to attempt to save a fetus with a 1 in 3 chance of survival, doctors put in jeopardy the very thing the parents may desperately want if their premature baby dies – a chance for another baby.  Pushing the envelope of viability is really a grand experiment on human subjects that sometimes seems to focus more on whether or not the doctors and medical teams can create miracles of life in the moment, but doesn’t take a long view of what those lives might look like in the days, months, or years ahead.

A surgeon’s tool is surgery, so it is the prescribed course of action for many who are confronted with illness and seek help through our current medical system.  There are numerous unnecessary and unhelpful surgeries performed every year to provide “healing” from heart disease and back problems, as well as other maladies.  Based on our doctors’ advice, we are optimistic to a fault, believing we can prolong life and cheat death without truly understanding the odds in each healthcare situation, believing we will be the one with the winning lottery ticket and consoling ourselves when failure occurs that “at least we did everything possible to save a life.”  What this system denies is the possibility of a more compassionate acceptance of fate, and tragic though it may be, there can be such a thing as a good death.

Maternity care is particularly vulnerable to over-action and heroic measures because birth, by its very nature, is the entryway into life.  Our modern system of obstetrics in the United States uses numerous interventions and takes every precaution to ensure a healthy baby which, ironically, leads to the highest death rates of mothers and babies of any country in the industrialized world.  Countries that treat birth as a normal, healthy process intervene less and get better outcomes.  Often, the families that are receiving this over-medicalized care are not even given enough information to make care decisions based on informed consent, nor are they given true choice in the medical setting.  Blaming the women, and without question, blaming the babies for costly care is the epitome of shit rolling downhill.

All this care, optimism, and desire to cheat death – this attitude of “life at any cost” does cost us dearly.  Our inability to grapple with these issues ends up being very expensive, and truly does lead to “million dollar babies.”  I don’t have the answers for many of the questions these dilemmas raise.  What I might choose in a life or death situation would be very different from what you would choose, I am sure. There are no simple solutions.  It seems to me though, if doctors want to advance medical science through human experimentation the subjects should be fully informed and not have to pay for it, and if we truly believe as a society in “life at any cost,” that should extend to everyone and we shouldn’t gripe about it when it comes time to actually pay.

If AOL had planned for the rising costs associated with the rollout of the Affordable Care Act, which strives to provide everyone in our country with access to healthcare so they too might have a chance to cheat death, it would not have made the news.  If AOL leadership had respect for and appreciation of its employees to the point of reducing management’s salaries in favor of buffering these unusual and short-term costs of healthcare and retirement for its workers, it probably would not have made the news.  If it made an effort to improve the healthcare system in our country to one that is evidence-based, efficient and affordable, that probably would not have made the news either.  That bad behavior gets highlighted instead of examples of how to move equitable, affordable, high-quality healthcare forward for our country; that makes me “distressed.”

 

Michal Klau-Stevens is The Birth Lady.  She is a Lamaze Certified Childbirth Educator and expert on citizen childbirth issues.  Her website is TheBIrthLady.INFO.

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