Wednesday 15 August 2012

"God's Little Joke" - A Tragic Story

I guess I am used to witnessing pain, so I do not cry easily.  But this morning I read an article from "Psychology Today" that made me weep silently, my stomach in knots.  Titled "The Cyclops Child" and written by a retired MD, it tells the story of this doctor as a young man (fifty years ago) tending to a newborn with multiple deformities.  The obstetrician, intending to save the parents from the grief of seeing their baby, recorded the newborn as deceased and installed the baby in a ward with instructions to withhold food and water.  Somehow, the infant survived for a couple of days and even cried normally which was deeply disturbing for the author of the article and other staff on the ward.

Years later, the author/physician wonders if the decision to lie to the parents about their baby's demise was ethical.  He concludes that the correct action would have been to smother the baby.

This story, told by someone closer to my parents' generation, reveals much about our deepest feelings to do with normality and the limits of what humans should face in birth and death.  It reveals much about what doctors feel is (or was) their burden to police these ethical guidelines as well.

What is missing in this telling is the voice of the parents.  What made me cry is their missed potential to have loved their baby and to hold him until he died.  The bond between parents and their newborn is, I believe, the very root of civil society and it is more malleable and robust than this doctor believes.

Some might read this story and ask, "But would you keep a baby alive by any means when they clearly cannot live without extraordinary life-saving technology?"  My answer to that question is no.  I have too many friends whose babies have been saved and yet whose care is so burdensome to all concerned that families break down.  "Why did they save my baby if no one will help me raise her?" asked one mother/friend who performs 24 hour nursing care at home.   So, no, I believe that palliative concerns at birth should be made in consultation with parents and social workers who will give them a real picture of what lies ahead, should extraordinary measures be taken to extend life in babies born with severe anomalies.

The doctor writing about the "Cyclops Child" reasons that "it wasn't really a baby - it just sounded like a baby".  But it was a baby to its parents, and they could have loved him until he died.


Eva said...

Donna, you say it so well. That child was a child to the parents and if we are people at all it is because someone cared for us, or would have, as parents care for and about a child.

The Caregivers' Living Room said...

I was thinking that even if the parents could not face their newborn, a staff member in the nursery could have held him until he died. I believe that we need a shared understanding of the importance of nurturing a new life, whether or not that life is very different from our own. Furthermore, every parent I have ever known has seen the beauty in their child including those with disability or disfigurement.

Anonymous said...

This is indeed a very sad story, but it is important to be told - speaking for a child who was not given the opportunity to be heard.

Human touch is so important, this cherished child of God might have lived longer than expected with nuturing. The parents should have had the opportunity of knowing, holding, loving and naming their son/daughter.

I am glad to hear that this doctor is wondering if it was the right choice. It wasn't and perhaps he is struggling with making a decision that was not his alone.

How my heart aches for the parents.