Survival of Extremely Premature Infants Opens New Ethical Decisions

Extreme measuresChanges in what we can do always lead to new questions about what we should do—questions about what is prudent or loving or wise, about what serves human wellbeing or even that of the broader web of life. Recent medical advances around resuscitation and life support for extremely premature infants are no exception, and new options have opened a set of difficult conversations that many would rather avoid.

Earlier Viability

This fall, two groups of experts lowered their bar for neonatal resuscitation from 23 weeks gestation to 22 weeks because new medical technologies allow an increasing number of infants delivered at that stage to survive by completing their gestation outside of the womb. For couples who are yearning for a baby but faced with a tenuous pregnancy, this news offers new hope.

There is good reason to believe that sometime in the future it will be possible to incubate a healthy human infant outside the womb from the time of conception, and medical practice is inexorably moving toward that point.  If we ignore, for the moment, the question of healthy development after the fact and focus simply on survival, the statistics are already impressive:  About 72 percent of infants born at 25 weeks gestation survive, followed by 55 percent of those born at 24 weeks, 26 percent of those born at 23 weeks, and 6 percent of those born at 22 weeks.

In the past, the second trimester miscarriage of a wanted pregnancy led to loss and grief. Now things are more complicated.  The potential for survival means that doctors and families faced with late miscarriage are also faced with a complicated decision—whether or not to initiate life support that includes incubation, intubation, a chemical bath to stimulate lung development, and possible repeated surgeries and transfusions during the coming months or even years.

Life and Quality of Life

Were this simply a matter of life and death, the questions faced by families and medical ethicists might be much clearer. Unfortunately, at this point in history, most extremely premature infants grow into children who experience a lifetime of cognitive or physical disability, sometimes subtle and sometimes severe, and doctors are unable to predict in advance which few will go on to lead healthy, normal lives. In one study of 357 live births at 22 weeks, published in the New England Journal of Medicine, active treatment was started in 79 cases and 18 survived.  Of those, 11 were moderately or severely impaired as toddlers, presaging a lifetime of special needs and intensive support services.  The extent of more subtle mental and health impairments in the other seven remains to be seen.

The challenges come in part because at this stage in history even the best state-of-the-art care outside the womb fails to provide a perfect incubation environment for a developing fetus. Also, the process of transitioning a fetus from womb to external incubation is imperfect. Interruptions in the flow of oxygen, temperature fluctuations, and other aspects of the transition can have lifelong consequences, whether that life is short or long.

Nature’s Imperfect Wisdom

But another set of challenges comes from the fact that early miscarriages are pregnancies that nature herself is rejecting, often (though not always) because the mother’s body has not been able to provide a healthy gestational environment or because the fetus is defective. In other words, these are budding lives with the odds stacked against survival and subsequent health even before any question of imperfect medical technology or care comes into play.  Miscarriage—or in medical terms, spontaneous abortion—is one of nature’s mechanisms for stacking the odds in favor of healthy children. Sexual reproduction, which combines DNA from two individuals of a species, is a vastly imperfect process, and nature optimizes for healthy offspring by rejecting most combinations at some point along the path. Very defective eggs or sperm may fail to form an embryo. Most embryos fail to implant or else spontaneously self-abort. As pregnancy progresses, spontaneous abortion becomes less likely, but a high death rate from imperfect reproduction continues clear into infancy for most species, as it has historically for ours.

In human beings, an estimated 60 to 80 percent of fertilized eggs fail to reach the live birth stage even without therapeutic abortion as part of the mix. In humans as in other species, this failure rate is—to put it in tech terms—a feature, not a bug. It allows for the mother’s body to put energy into those offspring most likely to survive and thrive and go on to have healthy children of their own.  But this process too is imperfect. Sometimes a healthy fetus gets rejected from a healthy mother; sometimes horrible defects slip through—even those that are incompatible with any form of life outside the womb.

With Great Power, Great Responsibility

Acknowledging this brings us face to face with a sobering set of questions. We have more and more ability to override nature’s mechanism for increasing healthy births, to sustain some of the budding lives that nature rejects. We also now have the ability to augment nature’s winnowing process, both by preventing high risk pregnancies and by inducing abortion of those conceived under adverse circumstances or known to be faulty.  As medical technologies move the dial on what’s possible, viability becomes an increasingly poor guide to human flourishing—in other words, to what we should do.

Our public conversations about this are heated, but also spotty. Women or couples who choose to abort ill-conceived pregnancies are shamed and called irresponsible or selfish or even murderers—from the pulpit, sidewalks, and halls of Congress. More quietly, they also are honored for prudence and wisdom, for following through on their commitments  to schooling or community service or the children they already have, or the children they hope to bring into the world when the time and partnership is right. Our debate about therapeutic abortion may be ugly and polarized, but it is vigorous.

But when it comes to the other side of the equation, mostly silence prevails; and despite the fact that early life-support decisions are enormously far-reaching, doctors may be sanctioned for offering honest opinions about prospects.  Incubation outside the womb has the potential to produce a healthy child, one who is desperately loved and wanted. This is morally consequential. But when we are talking about extreme prematurity, it has even more potential at this point in history to set in motion a trajectory of ill health and constrained development, a trajectory that affects not only the family in question but a whole community.

Parents who decide to pursue external incubation of extremely premature infants rather than letting go and starting over—or hospital ethicists who sometimes override the wishes of parents—are committing deeply to an act of love and hope. They also are committing not only that family but the whole community to pivot from other endeavors, to invest instead in a prospective life with the odds stacked against much that we think of as human flourishing. The joys can be enormous, but cost in suffering can be enormous, too, as can the cost of resources diverted. The financial price tag for neonatal care—running to a million dollars or more per case—is merely a crude indicator of the enormous diversion of energy and resources required for such an undertaking, but it begs us to consider the broader opportunity costs—the services and even alternate lives foregone. Only the most hardened narcissist thinks that it doesn’t matter—that the ways in which our decisions ripple through the lives of others are inconsequential. Only the most naïve socialist thinks we can have it all.

There is no right answer to these questions, nor is there likely to be a broad consensus anytime soon. What we can do is in motion, which means what we should do is in motion as well. As in all areas of scientific and technological discovery, advances in medical practice present us with an evolving flow of hard decisions that pit our own deepest values against each other, forcing us to prioritize one over another in situations where the outcomes are obscure even if the risks are clear—and where the cost-benefit equation itself is constantly changing.

The best we can hope for is a vigorous conversation, one that is guided by scientific information and our deepest values—one that isn’t short-circuited by wishful thinking or our strong desire to avoid difficult topics, or our even stronger tendency to fall back on outdated agreements reached by our ancestors who faced similar struggles under very different social and technological conditions.  Above all, we must remember that all of us are guided by a deep yearning to live the lives of our choosing within thriving communities and to give our children the very best of our love.

Valerie Tarico is a psychologist and writer in Seattle, Washington. She is the author of Trusting Doubt: A Former Evangelical Looks at Old Beliefs in a New Light and Deas and Other Imaginings, and the founder of www.WisdomCommons.org.  Her articles about religion, reproductive health, and the role of women in society have been featured at sites including AlterNet, Salon, the Huffington Post, Grist, and Jezebel.  Subscribe at ValerieTarico.com.

 

 

 

 

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About Valerie Tarico

Seattle psychologist and writer. Author - Trusting Doubt and Deas and Other Imaginings. Founder - www.WisdomCommons.org.
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16 Responses to Survival of Extremely Premature Infants Opens New Ethical Decisions

  1. Hank Pellissier says:

    Hi Valerie —  We will have Steven Umbrello post this great new article by you. There is a back up of articles – so it might not appear until December 26 thanks again for your excellent writing – much appreciated Hank

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  2. whistlinggirl2910 says:

    Call me a utilitarian but we need to factor in that other lives might be saved if we don’t squander the human and monetary resources on one iffy, extremely premature neonate. Even in the USA, not everyone has the means to access this level of care for their problem pregnancy (to say nothing about ensuring that every pregnancy is wanted and prepared for by parents who are nutritionally sound and healthy).

    Call me a pragmatist but I think parents need straight talk from doctors and ethics committees, so that no stigma if they make prudent and the right decision for them in the moment. (And for this I blame the religious and political right with its obsession with controlling women’s reproduction and it’s radical disempowering of women who never wanted to get pregnant in the first place).

    And finally, call me practical if I state that some couples are not going to succeed in their desire to create a child together. There are factors medical science haven’t discovered yet. The idea of an artificial womb sounds chilling to me and discounts all the complex biochemicals and signals that pass between fetus and it’s host, the woman who will be its mother.

    There are worse things than being ‘childless’ and I think we all need to be looking at how utterly and mindlessly pro-natalist we are in this world. Billions of children go to bed hungry at night or beaten, or pushed into sexual slavery at an early age, and we in the West can only think about fulfilling the archetype of the “Golden Child” we want to raise and show as a display of our success. Said child often, parent, cares only for itself.

    We need to look at the pressures on parents to conceive and bear, usually with the best intentions, on hopes, when the human population is 7.25 billion and like the damage done to our environment, growing. This pro-natalism is
    a core feature of religions (read The God Virus by Darrel Ray), politics (Japan is facing a population decline and China has its own population changes not related to its ending their one child policies). And pro-natalism also comes from economists and businesses which want more consumers and more workers to improve their bottom line and prestige on Wall Street.

    Liked by 2 people

  3. OM(pretend)G! Who is that baby? If it’s me you’re in so much trouble, you don’t even know!!!! :P It’s probably not because at no point do I recall ever being able to get such a tan- so it’s probably someone from NJ.

    Liked by 1 person

  4. I agree, there are some very difficult choices to make, just like at the end of life.Your choice of words are interesting ” Budding life”. Could you please clarify for me. By budding life do you mean potential for life or an actual human life. I’m not hear to argue, just wondering what you personally mean by that phrase. Thanks.

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    • By budding i mean at an early stage of development. I think every sperm, egg, blastocyst embryo or fetus is alive, and that all have varying degrees of potential to develop into a human person if they are comprised of human cells. Budding also means that potential has yet to be fulfilled –not the potential for life but the potential for developing into a human person. .

      Liked by 1 person

  5. Vicki says:

    This is controversial topic to say the least.

    Liked by 1 person

    • Socially controversial. But i think at a deep personal level it’s just complicated and hard. And we don’t do families any favor by taking those complexities and turning them into social controversies, with preachers and politicians trying to decide how everyone else should live.

      Liked by 2 people

      • whistlinggirl2910 says:

        I couldn’t agree more, Valerie. I worked for years as an interfaith hospice chaplain. Now retired, I advocate for Death with Dignity legislation and the organization Compassion and Choices. Which brings up the “dignity and worth” principle in my Unitarian and Universalist denomination. The fetus has dignity and worth as a “budding” person but that does not mean a “paramount right to life” must prevail should a woman decide to have an abortion.

        I’ll have to think this through later about the dignity concept. Certainly, a photograph of a naked red prenatal baby does not honor the individual child’s dignity, but it’s needed for readers/viewers to realize the situation, how tenuous life is when these early, early preemies are. And how difficult and challenging decisions are about their care or even withdrawing care. This gives new meaning to the term ‘in loco parentis’ for the doctors, as well.

        Society seems more accepting of adults ending their life ‘prematurely’ as in the Death with Dignity legislation that is now in five states, if memory serves. An adult is competent and give consent. We must weigh the good that might come for a preemie that will be totally compromised for life. It really brings to the fore the concept of mercy.

        I would come down on foregoing care for premature neonates that some doctors persist in trying to “save” but then we are in the realm of medical ethics and I think we are not used to thinking of ethics outside of the realm of our own religion. That’s why I like humanist ethics, Virtue Ethics. We can look at a neonate’s life and future through a different lens than that of certain systems of ethics based on particular religions. We may learn more and end up with with a greater understanding of how, when, and why to make these hardest of medical decisions.

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  6. Diane G. says:

    I’m so glad you addressed this, with your usual well-informed, compassionate yet realistic style. This issue of ever dropping age-of-viability has been troubling me, largely from the fear of what it might mean for female autonomy, but also from the POV of children saved only to deal with severe disabilities for however long they live. From that angle, choosing “heroic” measures no matter how great the odds of grave physical and/or mental disorders does seem to have a whiff of selfishness to it. Or blind faith, of course.

    Liked by 2 people

  7. Philip McKinley says:

    I recommend watching the documentary Little Man sometime to see this in action. The filmmaker documented the process of saving the life of an extreme premie that had been carried by a surrogate for her and her partner/wife (pre-marriage equality). The process is agonizing, and you see the extreme effort and expense throughout. The film is clearly tilted toward positively the efforts to save their “little man”, but for those who have read Valerie’s clear thoughts on the subject here, it could be a fascinating exploration of the subject. Having known the two women briefly in the past, I had a different viewpoint than many watchers likely have as they watch the “miracle” of keeping this child alive, and I felt very much the doubts of the one partner who was not so single-minded about saving the boy. Perhaps a spoiler, though it’s not part of the movie, but the women’s relationship completely fell apart a few years after the movie’s end.

    Liked by 1 person

  8. Lorie Lucky says:

    Valerie, I know of an ER Doctor who calls these super-early babies the $1 million dollar babies. Is this what any of us would want for our children – that they would be mentally or physically developmentally disabled, or perhaps even both? I think that our health care system needs to be built along the lines of trying to give the best health care for the largest possible number of people. If several severely premature babies are taking up high amounts of time and energy in neonatal units only to fail to thrive, does that take away resources from later term infants who have a better chance? And how will our nation handle the extremely high costs of trying to educate those whose intellect was damaged because they were initially too young to survive outside the womb?
    It’s a tremendous ethical conundrum for doctors. But I had a miscarriage in the 5th month of my first pregnancy (in 1968), and what the doctor said about the fetus and the miscarriage was that the miscarriage was my body’s signal that it “wasn’t meant to be”. Why should our advanced medical system force life on tiny bodies that aren’t really ready for it? And why should a miscarriage at five months be treated as a ‘delivery’?

    Liked by 1 person

  9. Gunther says:

    For those couples who can’t have children due to various reasons, there are thousands of children who would like to be adopted.

    Liked by 2 people

  10. allanmerry says:

    This original post is of Valerie’s usual balance, high quality, and value. From each of our personal mix of values and evolving viewpoints.

    Liked by 1 person

  11. allanmerry says:

    To Whistlinggirl2910: Thanks. I hadn’t read all of the prior comments, including yours. Having now done so: “I’m with you!”

    Liked by 1 person

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