When a Child Dies
By Karrie A. Oertli
Director of Pastoral Care and the James L. Hall Center for Mind, Body, Spirit.
Integris Baptist Hospital of Okla. City

The Sentence
There is no period at the end of grief
it dangles incomplete
life interrupts theirs
a child punctuates our lives forever
his absence poignant reminders. -- Fay Harden

This poem by Fay Harden says so much to me, as I remember witnessing with parents the unbelievable, earth-stopping time of a child's death. It speaks to me of the stunning nature of a child's death, how it does feel incomplete and incorrect, wanting to be tidied up and made right. It speaks to me of the terrible intrusion of death at a time when life is supposed to be beginning. It speaks to me of the long-lasting effects of a person's life, no matter how short or small.
This is the reality of death in the NICU. After having been a chaplain in the NICU for six years, I'm not sure that anyone can prepare anyone else for the moment of a baby's death. No amount of preparation or warning and brace us for that moment when the machines are turned off and the room grows silent.
We aren't wired for the death of a child. We live with expectations for babies to be born to grow and live and "become." I'm of the mind that we have this expectation because we want a future, not only for ourselves and our families, but for our world.

And so the death of a child is all the more devastating, because those deaths mark a change in the reality of our here-and-now as well as the hope of our futures.

While I don't believe we can have enough preparation to side-step the grief and pain of the death of a child, I do know that we can live afterwards. Part of this task is being tender with oneself, reframing life after the death, and recreating a story that continues into the future.

Since the process of grief has become more studied in the past fifty years, a great deal of work has been published on the subject. As the field has grown, certain models of the grief process have emerged. Most grief models rely heavily on the person's emotions as she or he goes through the grief process. The eventual goal of these models is to assist the person in working through emotions in order to be able to move on and live without the deceased person

Tony Walter, a grief specialist, has been doing work on an alternative model. In an article entitled "A New Model of Grief: Bereavement and Biography" (Mortality, Vol 1, No. 1, 1996, pages 7-25), he proposes that, in talking about the person who died, the survivors can "construct a story that places the dead person within their lives, a story that is capable of enduring through time." He calls the task of grieving the "construction of a durable biography which enables the living to integrate the memory of the deceased into their ongoing life."

I think this task is especially important for those who experience the death of an infant, and I also believe it is especially difficult. When we have children enter our lives, we look forward to the emerging story of their lives. Each step each milestone is a moment in our history as a family, and we treasure those little events.

When a child has died, those moments are lost to us forever, and we have no way of knowing what that little human would have become. It seems almost impossible to create a story of a baby's life when she or he has lived for such a short time.

However, I do think it is possible to do this. While we may not be able to create a story which encompasses all the joys and sorrows of a human life whic spans many decades, we can state certain truths about a baby's life:

• " She was born,"
• " he touched so many lives,"
• " she influenced our family in so many ways,"
• " he's brought a great deal of joy to us,"
• " she taught me more about love,"
• " he moved me to more responsibility,"
• " she changed my life."

These and other comments come to my memory as I recall what parents have told me after the death of their children. I'm always struck with this thought: The story may be short, but it is an entire story.

I encourage parents who are grieving the death of a child to construct the "durable biography" of their baby's life, however short or long that biography might be. Perhaps parents would chose to write the story in a book; others may choose to let it be part of their family's verbal history. In whatever way the story is told, let the story become part of the family's fabric of history, so that the child is remembered forever.