Birth Plan: Chronicle of a brief life foretold

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.