23 Weeks

23 Weeks

    This number kept popping up, and for many, its time is a matter of life and death.  Twenty-three weeks is basically the cutoff date for a mother or parents, the last date that they can legally make their own decision as to whether to proceed with the birth or not.  This isn't abortion, this is simply a decision to continue with their pregnancy; but often at this point, the baby is in trouble.  It's a preemie, the doctor tells you, and with all that that entails, the baby's odds of making it in this world are not good...in this instance, having a head start on life is not advantageous.  In an article in The Sun (a magazine graciously introduced to me by a cherished friend, fellow reader, advocate, and vocal defender of things and people needing defending), author Genevieve Thurtle talked about her own decision at twenty-three weeks.  Her doctor enters and tells her of what he feels might be happening to her premature baby: ...the probability of compression deformations and cerebral palsy and massive brain bleeds and paralysis and blindness.  He believes in tubes attached to her fetal skin--skin so delicate it can tear at a touch.  He believes in powerful antibiotics that could cause her organs to revolt.  He has seen it before..."We'll keep her alive, if that's what you want.  That's our job."...the neonatologist comes in next; he says that 75 percent of women deliver within a week of membrane rupture.  He says that if they induce labor now...we will have complete say in her care and how much we want the doctors to do to keep her alive.  But if I deliver a few days from now, my daughter will be twenty-four weeks, and the hospital's ethics board will step in to limit our choices..."at twenty-four weeks, she will be considered viable."

    The late neurosurgeon, Paul Kalanithi, wrote in his book about the experience, that preemies, "if they survived, apparently incurred high rates of brain hemorrhages and cerebral palsy."  His first assistance at a birth came early in his medical years, the emergency delivery just that, an emergency as the tiny lines on the monitors spiked, the C-section delivering two babies no larger than the surgeon's hands.  In his excellent book, When Breath Becomes Air (written even though he knew that his own cancer prognosis was fatal), the nurse elaborates on the births:  ...twenty-four weeks in utero was considered the edge of viability.  The twins had lasted twenty-three weeks and six days.  Their organs were present, but perhaps not yet ready for the responsibility of sustaining life.  They were owed nearly four more months of protected development in the womb, where oxygenated blood and nutrients came to them through the umbilical cord.  Now oxygen would have to come through the lungs, and the lungs were not capable of the complex expansion and gas transfer that was respiration.  Having just finished his medical boards, Kalanithi is still in awe at watching his first actual birth, going to see the twins in the NICU, ...each twin encased in a clear plastic incubator, dwarfed by large, beeping machines, barely visible amid the tangle of wires and tubes.  The incubator had small side ports through which the parents could strain to reach and gently stroke a leg or an arm, providing vital human contact.   

    In the earlier story, the parents have another three-year old son and are not that well-off financially.  In the latter story, the parents have no insurance.  My neighbor, long in the field of medical research and a former nurse in the emergency room, elaborates.  In many countries, even highly subsidized countries such as Canada and Sweden, the hospital makes the decision that the costs of saving such preemies and the expenses of later caring for them are deemed better spent elsewhere.  But in the U.S., the number of preemies saved, pretty much at any cost, is accepted and in many cases, absorbed by tax-payers.  The first week alone of treating a newly-born preemie can top $100,000...the average stay in NICU, my neighbor tells me, is often six months or more.  Most insurance used to cap out at $1 million (if Obamacare, properly titled the Affordable Care Act, is repealed, this cap will return)...at a little over 2 months times, with their insurance now gone, the parents would have to begin selling their home and cashing out whatever savings and retirement funds they might have.  The costs just to pay the hospital bill will generally soar past $3 million.  And that is just the cost to leave the hospital.  At home, the costs for the parents will continue as breathing equipment and special needs in raising their child will continue...in most cases, the parents go broke and the taxpayers (i.e., the government) take over.  At twenty-four weeks, my neighbor tells me, the state has to do everything to keep the baby going...the baby is now viable.

    So jump back to the parents; how much time do you take away from the lives in front of you, your other child or your spouse...or yourself.  As much love as you might have for your yet-to-be born baby, will you be ready and able to truly devote the time and energy to your new addition?  Such are the truly gut-wrenching decisions a mother-to-be of a preemie has to face, if indeed her baby appears to be in distress.  In Kalanithi's care, the twins didn't make it, something the nurse adds to by saying, "You think that's bad?  Most mothers with stillborns still have to go through labor and deliver.  Can you imagine?  At least these guys had a chance."  And if they did nothing, no C-section, let the babies go to term, he asks.  "Probably, they die," the nurse says.  "Abnormal fetal heart tracings show when the fetal blood is turning acidemic; the cord is compromised somehow, or something else seriously bad is happening."  "But," Kalanithi asks, "how do you know when the tracing looks bad enough?  Which is worse, being born too early or waiting too long to deliver?"  Her answer?  "Judgement call."

    Back again to the parents.  Judgement call.  And as Kalanithi says, "How could I ever learn to make, and live with, such judgement calls?...would knowledge alone be enough, with life and death hanging the in the balance?  Surely intelligence wasn't enough; moral clarity was needed as well.  Somehow, I had to believe, I would gain not only knowledge but wisdom, too."  He quotes Samuel Beckett, the words haunting him at night: One day we were born, one day we shall die, the same day, the same second...Birth astride of a grave, the light gleams an instant, then it's night once more.

    My neighbor continues, the majority of our healthcare spending occurs here, at such early stages, and also at the end stages...my mother.  I've seen the bills.  The rehab, the surgery, the phrases of hers now being repeated a bit more often than before.  In an assisted living facility, her mental abilities and mobility still relatively intact, the costs easily go past $65,000 per year.  Should either of those abilities go, the costs go up exponentially...the government (i.e., the taxpayers) may have to step to absorb the costs.  A judgement call.

    End of life?  Beginning of life?  $3 million?  Bankruptcy?  Welfare?  Love of a child?  Love of a parent?  Other people intervening to make you decision for you (protesters, aging Congressional politicians, doctors and emergency crews, distant relatives)?  The questions are many, the decisions internally stressing and pulling at your heart.  It's a complex tale...and (sorry) something to be continued in the next post.