Deseret News | When A Birth Is Also A Death

When A Birth Is Also A Death

Angel Watch helps parents celebrate life — however brief

By Elaine Jarvik
Deseret Morning News

Published: Saturday, March 1, 2008 12:12 a.m. MST

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The bad news often comes at 20 weeks, during the fetal ultrasound, a normally celebratory occasion in which the expectant mother and father are waiting for the word boy or girl . But now, suddenly, there are other words: anencephaly, hypoplastic, triploidy.

And then more words, at once cryptic and heartbreakingly clear: Your baby is not compatible with life.

And so, says Marci Decker, one horrible day last July she and her husband, Gifford, were given a choice. Doctors could induce Marci at 20 weeks, in which case their baby would certainly die, or Marci could continue to carry the baby — a little girl, as it turned out — knowing that the eventual birth also would be a death.

This is not a story about the pros and cons of terminating a pregnancy. Instead, this is a contemplation about loving what you know you will lose; about accepting that a life in the womb, and with luck maybe a few hours of life outside, is enough.

In the history of childbirth, this is a relatively new phenomenon, this chance to peek into the womb and know beforehand that a baby is in grave peril. So the advent of ultrasound technology eventually also spawned a new field — perinatal hospice — for families who have received a terminal diagnosis about their unborn baby and have decided to proceed with the pregnancy in spite of it.

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Eight years ago, bereavement specialist Kay Tanner and pediatric nurse Carolyn Kasteler, who were both then working for Utah Heritage Hospice, started a program they called Angel Watch. There was nothing else like it for Utah parents facing such a situation, and at the time there were at most a handful of similar programs nationwide.

Tanner and Kasteler created a brochure, sent it to area obstetricians and hospitals, and then waited for their first phone call, aware that there are at least 75 cases of lethal fetal anomalies every year in Utah. Nearly a year later, they were still waiting. If someone doesn't contact us soon, Kasteler told Tanner, maybe we'll just close up shop. And then, one day not long after that, there was a call from a woman whose unborn baby was growing without a skull, a condition known as acrania.

So they drove to her house, Kasteler recalls, and then they sat in the driveway and looked at each other, wondering what they were actually going to say when they got inside. "Then we said a little prayer. And we realized she doesn't know that we don't know what to say." Besides, adds Tanner, the real task at hand was to listen.

Since then, the women have worked with more than 100 pregnancies, and in 2006 Angel Watch became a pilot program of Intermountain Healthcare. Through their work, Tanner and Kasteler support a couple's decision, whether it's to terminate the pregnancy or to proceed, offering permission to grieve. If the couple chooses to continue the pregnancy, the women also offer permission for the parents to engage with their unborn babies.