From Deseret News archives:
When A Birth Is Also A Death
Angel Watch helps parents celebrate life — however brief
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.
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.
