Deborah Alecson | Musings on Mortality: Life-or-death decisions in the 'grey zone'
The "life-at-all-costs" mentality that we have in our death-phobic culture applies not only to the elderly, but to newborns as well. Not surprisingly, the two most lucrative sources of medical intervention generate from the neonatal intensive care unit and the intensive care unit when used to keep death at bay in the last days, weeks or months of life. Medical technology is capable of salvaging what would be a naturally occurring miscarriage.
In this column, I explore the toll and fallout from the imperative to save fetuses born on the margins of viability, also known as the "gray zone." The gray zone infant comes into the world between 400 grams (under one pound) at 23 weeks and 705 grams (under two pounds) at 26 weeks. Keep in mind a typical full-term birth and weight: 40 weeks gestation weighing between 2,700 grams — 4,000 grams (6 — 9 pounds). Out of 100 infants born at 24 weeks, 63 will survive to go home. Of those 63, 16 percent will have no disability and 21 percent severe disabilities. These are dismal statistics.
I learned of the birth of a infant at 24 weeks gestation, weighing 1 pound 3 ounces. This is a gray zone baby. This is the first child for young parents who do not speak English and struggle financially. There are some rare neonatologists out there who would not have attempted to resuscitate and save this infant. This mother ended up at a hospital where the infant was "saved." As of the writing of this article, the infant has survived for a little over two weeks.
I question why any neonatologist with common sense, empathy, and compassion would first resuscitate a gray zone baby and then burden such young and inexperienced parents with the heart-wrenching roller coaster ride of witnessing one's infant connected to all manner of apparatus hour after hour, day after day, month after month. Should this infant survive to be discharged, the cost would be around $300,000 give or take tens of thousands of dollars (depending on complications). Not all of this is covered by health insurance.
Some of the potential disabilities for a gray zone baby are cerebral palsy, an inability to walk, low intelligence, blindness, and hearing loss, not to mention on-going lung issues. A gray zone baby that survives will need intensive early intervention and in all probability, special education. What of the young couple? The mother is now living in a room near the NICU and is obviously unable to work when income is desperately needed. She is depressed and her loving, extended family are worried.
Much of the treatment plan for the baby is not comprehensible even with an interpreter. The lingo of neonatal intensive care is foreign to even the most educated. Under these circumstances, I question whether informed consent can be given if the parents do not understand what they are consenting to given the language barrier.
Unless you have seen with your own eyes a premature infant in an isolette tethered to machines, you can't imagine the horror, especially when it is your own child. How then would it be possible for a neonatologist who certainly knows more than this young couple to have let this infant die a natural death? The answer is, it is not possible in a death phobic-culture.
A counter argument could be that perhaps the couple is of a religious persuasion that encourages life at all costs. Perhaps this couple does understand the potential disabilities their child would sustain should he survive; but, it is God's will. The question is: Is the survival of this infant God's will, or human will? Was it God's will that this be a miscarriage in the first place?
Deborah Golden Alecson is a death, dying and bereavement educator and speaker who resides in Lenox. She is the author of three books that deal with her personal loss. Learn more at deborahgoldenalecson.com.
TALK TO US
If you'd like to leave a comment (or a tip or a question) about this story with the editors, please email us. We also welcome letters to the editor for publication; you can do that by filling out our letters form and submitting it to the newsroom.