Recently, I experienced what I can only call a parallel universe. I was in a neonatal intensive care unit to visit a mother and her extremely premature and critical newborn. This newborn came into the world at 23 and a half weeks gestation weighing 19 ounces. I wrote about this baby in my last column and called her and others of such low birth weight and young gestation "gray zone babies." She wasn't the tiniest on the unit. She had a respirator to help her breathe making it impossible for her to cry. She was writhing and grimacing and suffering but she couldn't cry.
I had a brief exchange with the NICU nurse. I asked, "Isn't there a cut off?" She didn't understand my question until I elaborated that I meant a cut off as to when a baby is not "saved." She thought so — maybe 22 weeks or right at 23. It depends. I said, "If this baby survives, she will need early intervention and then special education." She disagreed with the special education part and reminded me that each baby is an individual, etc. She said, "We don't have a crystal ball." While this is true, there is statistical information regarding the prognosis of gray zone babies. I didn't tell her that I know about this because I do research, and I have been an early interventionist for many years in my former career as a special educator.
As she walked away she stopped, turned, and challenging me said, "I hope that you are not talking to mom about these things." What she meant was that the family had to remain positive, upbeat, and in the dark. These are the implicit rules of the NICU. I looked around. This is when I knew that I was in a parallel universe. I saw isolette after isolette with fetuses who had been destined for miscarriage but were now hooked up to machines to breath for them, exposed and outside the womb. In other words, I saw torture. I saw crimes against humanity. I saw young broken mothers depressed and frightened and going along with the plan to keep their newborns alive. The babies had "good days" and "bad days" and the mother's ability to put one foot in front of the other was based on whether it was a good day or a bad day as dictated by the NICU doctors and nurses.
I looked around and wondered about how we have become a culture of medicine that disregards the natural impulse of death; the fate of most critical babies as they are challenged by the rest of their lives; and most importantly, the families that must care for them once they are discharged. I saw collective madness and death-phobia of the worst kind.
What I saw and felt and knew to be true was absolutely not what those in the NICU saw, or what is seen by those advancing medical technology to save gray zone babies, and certainly, not by the hospital. As I mentioned in my last column, a NICU is one of the greatest sources of revenue in any hospital. I saw torture and madness but in their universe this was a place of miracles, hope, and promise. If they succeeded at their job — which is to discharge a living baby — then this is all that counts. And to their credit, there is a baby who does survive and doesn't go on to develop cerebral palsy, mental retardation, and learning disabilities. To their credit, there are the success stories, but these few success stories at the margin of viability will never justify the suffering of newborns in the NICU and then their extended poor quality of life. Never.
Deborah Golden Alecson is a death, dying and bereavement educator and speaker who resides in Lenox, Mass. She is the author of three books that deal with her personal loss. Learn more at www.deborahgoldenalecson.com.