May is Anencephaly Awareness Month. In our family, we are now intimately aware of anencephaly, but we weren’t always.

I had heard of anencephaly, but this somewhat-obscure prenatal condition did not register in my consciousness, at least not until I carried under my heart a child with this condition. Then I began to hear of more and more cases. Awareness grew.

“Incompatible with Life”

Anencephaly is a neural tube disorder in which part of the skull is missing and little or no brain is detected in the scan. Prenatal diagnoses are generally detected during the 20-week ultrasound. The mother is referred to a more specialized institution where she receives a higher level scan. At that scan, what happens next depends on the diagnosis, the professionals involved, and the mother in question. If the diagnosis is something that can be repaired through surgery or easily managed, often the family is referred to specialists in that area and make a medical plan for the child’s care following birth. The mother may or may not be able to deliver at the nearby hospital. Some families temporarily relocate in order to deliver the child spontaneous at a specialized facility.

Typically, when a prenatal diagnosis is life-limiting, incompatible with life (such as in the case of anencephaly), or considered too drastic a decline in “quality of life,” most doctors will immediately recommend abortion. In some cases, they offer to walk the mother to another floor of the facility, then and there, in order to kill her child.

This was the story I knew. It was the one touted as to why late-term abortions should be allowed. In my experience, pro-life stories of life-limiting or severe diagnoses were usually filled with happy endings: the child did not die or lived longer than expected for glorious memory making.

As I sat there staring at the ultrasound screen, knowing there could not be a mistake in what I saw with my eyes, whatever awareness I had paled in comparison to the news I faced that day.

Early Induction?

When I received the initial diagnosis, I cut off the doctor’s speech and said, “we will never consider termination.” Made brave by my son’s medical adventures, I was able to express my views clearly and with conviction. The doctor went on to encourage early induction. “You could induce as early as want, even today…if you wanted.”

According to the US Catholic Bishops’ Statement on Anencephaly, early induction is never morally permissible. They give their reasons, but they neglect to say the wisdom that Fr. Benedict Ashley includes in his explanation, “To terminate a pregnancy even after viability is deliberately to intend to deprive a child of his or her natural right to be protected and nurtured in the womb.” Thus my daughter lived for 37 weeks.

Although I had experience with dealing with the medical system, as well as a faith that gave some answers and meaning to the situation, I was still unprepared for this situation. What did I know, and what did I wish I knew?

What I Did Know

  • I knew it was possible to accept a child’s death with grace, however deep the abyss of sorrow. I watched as my youth minister and his wife mourned the death of their 7-year-old son after a long medical journey following an accident with a drunk driver.
  • I knew it was possible to accept a prenatal diagnosis with grace. I followed Facebook posts on a friend’s child diagnosed with an omphalocele, in which the organs grow outside the body while the child is still in the womb.
  • I knew God works all things for good.
  • I knew that we would not be abandoned at the cross, that great suffering was part of a life with God, that to take up our cross and follow him sealed the deal on our discipleship with him.

What I Would Have Others Know

  • That it is good to make bold prayers, and sometimes praying for acceptance is the boldest prayer available. Acceptance is the first task of grief.
  • That the crisis is the diagnosis, grief is already in process even though the child is not yet born.
  • That a profound relief and a new flood of grief comes after the child is born.
  • That the child is an individual person, created by God, who has a name. My daughter’s name is Celeste. She is not a poster; she is not a cause; she is my daughter. When others call her by name, the sounds of her name on my ears, affirming her existence, was one of the sweetest gifts I receive.
  • That every pregnancy is a gift and a miracle, but not all gifts are happy and not all miracles are performed through physical healing.

It was the awareness handed on to me through others that prepared me for the bend in the road. The redemptive value of suffering and intimacy with the God-Made-Man was the foundation for how we processed grief. It gave meaning to the cross.

It was consistent with Viktor Frankl’s principles of logotherapy and the Will to Meaning (that finding meaning is human’s primary motivator). Strains of psychology that admit of transcendent meaning in our lives made therapy a resource, and perinatal hospice a possibility.

We are all, in our way, desperate for meaning.

More than anything, I would want others to know a child is born with a purpose, to know suffering has a purpose, and that this does more than impersonal platitudes of consolation ever accomplish.