The National Catholic Review
John J. Hardt
Chronicle of a brief life foretold
Image

Pregnancies in which there is a diagnosis of fatal, congenital anomalies are rare but profoundly tragic. There exists within the Catholic tradition a developed moral debate about the appropriateness of inducing early labor in such pregnancies. The debate has largely focused upon whether, given the impending death of a baby upon or shortly after birth, labor may be induced when a pregnancy reaches viability but prior to full term in order to alleviate the potentially grave psychological burden to parents that can accompany these diagnoses and the inherent physical burdens of pregnancy that come to all expectant mothers.

In 1996 the U.S. Conference of Catholic Bishops contributed to the dialogue in a document by its Committee on Doctrine entitled Moral Principles Concerning Infants With Anencephaly. While acknowledging the “profound and personal suffering of the parents” and the “compassionate pastoral and medical care” these realities require of Catholic health care, the bishops, reasoning from the church’s teaching on abortion, concluded: “The fact that the life of a child suffering from anencephaly will probably be brief cannot excuse directly causing the death before ‘viability’ or gravely endangering the child’s life after ‘viability’ as a result of the complications of prematurity.”

What follows is not meant as a contribution to the particulars of the debate concerning how best to handle pregnancies with fatal anomalies. Instead, it is a sketch of one such case in a particular family. My purpose is to bear witness to the depth of human anguish that accompanies such a diagnosis, the strength of a family that patiently bore it and the grace present therein. Some details have been altered to protect the identity of the participants.

A Fatal Absence

The diagnosis, at 21 weeks, was Potter syndrome. Its clinical description, bilateral renal agenesis, bespoke the fatal, developmental absence. This baby had no kidneys, a genetic wrinkle that demarcates a deadly run of deficiencies: an insufficient amount of amniotic fluid, underdeveloped lungs and the inability of the baby to breathe on his own at birth. There was to be no “genesis” for this baby boy, at least no beginning as most of us think of beginnings for newborn babies.

“There is no treatment,” the doctor told her. “I’m so terribly sorry.” On hearing these words, the mother said, she became a living tomb. This doctor had delivered the two children who were waiting at home to hear about their new brother growing inside their mother. But now her baby was going to die, and there was nothing anyone could do about it. The diagnosis was taken in over the course of several days of grief and anguish.

A “fatal anomaly,” the doctor had said. Their baby had no hope of living. Excited discussion in the waiting room about when the pregnancy would reach “viability” was now rendered meaningless, the word made brittle and empty when set against the reality of this life sheered off at its root. There seemed no viable hope of anything.

The decision was made to seek an early induction, to end this pregnancy in which an infant was destined to die minutes or hours after birth no matter how long it remained in the womb. Everyone understood. But there was a problem.

The doctor sat down with the parents. “As a Catholic hospital, our practice guidelines preclude an early induction in this instance. We cannot help you with an early induction. I’m so sorry to be adding to the burden of what you’re going through.”

The mother wept. Minutes passed before the doctor spoke again. “There is another option I can offer you. If you wanted to stay here with us—and you don’t have to—but if you did, we would be privileged to bring this little baby boy into the world. We will monitor you and the baby closely for the rest of your pregnancy. I promise that I won’t let anything happen to you.”

They discussed this possibility at length. They painstakingly returned to the diagnosis. How did this happen? What could they expect for the remainder of the pregnancy? What will he look like when he is born? What if he is not breathing?

The mother concluded, “We need to think about this.” A week passed before she called the office and an appointment was made.

A Viable Plan

The day of the appointment came. “We would like you to deliver our baby. We’ve put together a birth plan. We need to know that you and the hospital will agree to it.”

She held out a single piece of white paper, 12 typed bullet points running down its left margin with two inked signatures at the bottom of the page:

• If I don’t deliver prior to term, we would like to induce delivery when the baby reaches full term at a date set with our physician.

• Please notify the chaplain in advance of our arrival at the hospital.

• We would like our baby to be given hospice care at birth. We are especially concerned that he not be in pain.

• If the baby is not breathing upon birth, we are requesting no medical interventions, no attempts at resuscitation.

• We reserve the right to change our mind about any intervention requests upon delivery.

• We are requesting a private room after delivery.

• We would like to have the baby baptized.

• We have arranged for a photographer to take pictures of us as a family.

• We would like to have footprints and handprints made of him.

• I would like to hold him.

• I would like to try to feed him.

• I would like to give him his first bath.

This baby boy was born in the dark of early morning. He died that same day, shortly after his first sunrise, within three hours. He was photographed and foot-printed, held and fed, bathed and baptized. He was judged to be beautiful and a blessing, and he died in his parents’ embrace, the blessed fruit of his mother’s womb.

If confronted with identical circumstances, some of us would think the choice these parents made would not be best for our families. But this story is in many ways paradigmatic of the values present in Catholic teaching on this issue. In particular, in this case we see the processes of illness, birth and death move according to their own determined time. The family seems to have moved along a similar continuum: an unfolding of grief, acceptance and meaning over the course of the nine months. The patience they exhibited is in stark contrast to our cultural instinct to take control of a situation and facilitate a rapid, almost immediate resolution. The life they baptized and loved is also in stark contrast to our expectations of what a new life “should be”—whatever that might be.

While we cannot deduce a universal conclusion from a narrative, such a story illustrates the beauty of the values of our Catholic tradition. And, to some extent, beauty is always a witness to truth.

John J. Hardt is an assistant professor of bioethics at Loyola University Chicago’s Stritch School of Medicine and assistant to the president for Mission and Identity at Loyola University Chicago.

Comments

PAUL SCHMID MR/MRS | 12/7/2009 - 11:49pm

Extraordinary!  Simply extraordinary was the John J. Hardt's article, "Birth Plan." (November 16, 2009)  I felt the need to share it with my wife - and I wept at times - for pain and joy, as I read it out loud.


It carries a message of strength that I wonder if I could ever muster.  But they did, maybe by mettle, and I suspect, mainly by grace.  I have never been more proud of our Catholic tradition, and the completeness it offers all of us.


O, the agony. O, the grace. O, the healing.  God, grant us all the strength to love and journey with LIFE's truth; however it is presented to us.

6466379 | 11/11/2009 - 12:35pm
Birth Plan, the "Chronicle of a brief life foretold," by John J. Hardt (America 11/10/09) is the most poignant pro-life tribute I have ever read! This essay ought to be distributed in all Catholic churches throughout the U.S. and also sent to every member of the U.S. Congress. Also, it ought to be part of all pro-life promotional literature.

Close to 40 years ago, my wife and I lost our third child in the third month of the first trimester through miscarriage. The experience was then and still remains traumatic, but no way near the wrenching loss experienced by the parents in "Birth Plan" who lost their child our request, by an attending nurse, who told us she held the tiny baby in the palm of her hand and baptized it.

Sad to say, at the time I didn't have the presence of mind to ask for the baby's body, so as to give it a prope Catholic burial. So our child was tossed into surgical garbage, where aborted babies and other hospital "garbage" end up, with used bandages and other hospital trash to be incinerated. Thus, apart from its mother womb, the surgical garbage can was the only cradle our child ever knew! For us, that's profoundly sad.

Fortunately, however, later on, we had him/her enrolled in the "Book of Life" at a special shrine dedicated to all children aborted, miscarriaged, or still born, at Holy Innocents Church, NYC. We named our child "Michael" if a boy and Michelle, if a girl and it was so recorded in the "Book of Life." A very comforting and wonderful thing.
Maria Davila | 11/9/2009 - 12:48pm
Thank you, John, for this reflection and case study. I agree with your last two paragraphs completely. Often the doctrine on the sanctity of life is worded such that we miss how it is meant to enrich the human experience. Bearing a child that one knows will pass on to God within moments, much like taking care of a spouse or a parent with a debilitating decease until the very end, are social acts that transform the humanity of all that touch that particular situation. The consistent ethic of life is meant to consider every life in every situation as a social and personal character in the presence of God. This case study highlights that very well. For example, in what ways was the priest that baptized the baby changed because of this experience? An older sibling standing by his or her baby brother? They too are part of the moral questions involved. Thanks, MT
Mary Wood | 11/8/2009 - 12:55am

There is a very interesting discussion based on this article in an Australian Catholic website.  Check out

http://www.catholica.com.au/forum/index.php?mode=thread&id=36543#p36560

Marie Rehbein | 11/6/2009 - 7:46pm

     It is, and should be, very hard to judge this situation.  It went well enough as it went.  However, it could also have gone as well had there been an earlier induction.  An early induction is not necessarily the same thing as say "get that thing out of me", but that is the implication made by those who wish to dictate the appropriate response to the sad news.  

     However, consider that in days before prenatal testing there would have been no prior warning as to what was to come.  The baby would have been born deformed and would have died, shocking the family and giving them no time to manage the news before facing its consequences.  If anything, this article is a justification for prenatal testing despite not having any option to intervene.

THOMAS FARANDA | 11/6/2009 - 6:32pm
I am familiar with several (4) similar situations. In all the cases, the families - in two cases single mothers - carried their baby to term and were ultimately glad they did. They handled the births and deaths in a similar manner to what Dr. Hardt describes.
Michael Bindner | 11/6/2009 - 3:21pm
This article is all the more reason for early induction, so that the child can be baptized. In many cases, the baby dies without baptism in the womb. While I trust in the mercy of God for such infants, I can only describe the Church's stand on this as squeamish. Life and death decisions are taken by doctors every day and often the Church comes down on the wrong side of these issues. In this instance, the mother was put at risk for a result that would not have changed had birth been induced much earlier.
Rhett Segall | 11/6/2009 - 2:41pm

Tears spontaneouly came in reading this story.  The wonder and beauty of birth, parenting, and the support of the Christian community simply rise up in the account. I shall share this story with my students in my moral theology class.

Rhett Segall,

Catholic Central H.S.

Troy, NY

Recently in Faith in Focus