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.
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.
"Kay and Carolyn asked what my biggest fear was," recalls Marci Decker. "I said, 'How do I put a lifetime of love into whatever time I have with her? How do I show her how much I love her, how much I wanted her?"'
To which the Angel Watch founders responded: "Why can't you start now?"
This carpe diem approach was actually something that Tanner and Kasteler learned from Lori and Lars Paulsen.
A 2004 ultrasound showed that little Lars Paulsen, named after his dad, had a heart and brain growing on the outside of his body, the result of the rupture of the amniotic wall. "They said to picture a rubber band shattering, so it was like shrapnel in the womb," says Lori. "Wherever he was hit with it, he had damage."
Ending the pregnancy early wasn't an option, Lori says, because of the couple's firm belief that "what's meant to happen will happen." The choice, then, was whether to just wait out the pregnancy or to make the most of the time that was left.
One day, while walking through a pile of leaves near her house, Lori spoke to her unborn baby: "Little Lars, can you hear the crunch?" This was an epiphany moment for her, Lori says; this notion "that we could still make him feel life." So the Paulsens sat their other three children down and told them that beginning that very day they were all going to teach little Lars about things he would never see or experience. They were going to, as Lori puts it, "love this baby into the world."
There were hikes to see the sunset, a sleigh ride, trick or treating, picture books. On the morning of little Lars's scheduled birth, big Lars took him for a ride down I-215 at 135 miles per hour in a borrowed sports car. "Little Lars kicked the entire time," Lori recalls. He was born several hours later and lived 65 minutes.
Sometimes family and friends wondered if maybe all this bonding would painful. But Lori has a different take: "The people who terminate the pregnancy or try to push the bonding away, I can't see they're mourning any lighter," she says. The whole experience was so life-changing for her family that Lori has written a book for young children about the process; she is looking for a publisher.
This does not have to be the most traumatic experience in a couple's life together, says Tanner about such pregnancies. Often a husband and wife will grow closer together, and the father is also given a chance to bond with the child he can't see. Zach Eagar read to baby Kylan in the womb and flew a kite with him. Gifford Decker took baby Savanah Lily camping. Some fathers have written their babies songs, or fashioned a casket.
Hospitals now realize that to whisk away a stillborn baby not only doesn't prevent grieving, but also may add to it "you can't say goodbye until you've said hello," as Tanner puts it. But some hospitals are still awkward. Marci and Gifford Decker kept Savanah Lily in their room at Utah Valley Regional Medical Center all night after she was stillborn, but the room was far away from the bustle of the maternity wing. "I was around a bunch of older people who were dying," Marci remembers. "I wanted to be around life."
Like the Deckers and Paulsens, Jennifer and Landon Coleman say their religious beliefs helped them celebrate the life of their son. Hyrum, diagnosed with hypoplastic left heart, lived for three weeks after his birth. "We couldn't have done it without our faith," says Jennifer. "We believe that we will see him again, and we feel that we want to be good because we want to be back with him again."
The families who get through these pregnancies the most easily, says Angel Watch's Tanner, are those "actively engaged in whatever faith background they're involved with." Those parents who have the most difficult time are those without a belief system, she says. But even couples without a faith can benefit from creating memories with their unborn baby. "If they don't believe in an afterlife, you offer the comfort of memory."
Occasionally, say Tanner and Kasteler, parents will worry that they're being punished by God. The women will then walk the couple through the ramifications of that belief. Perhaps, they'll ask, you believe that bad things only happen to bad people?
Yes, most of the couples still hope for a miracle as the pregnancy proceeds, says Tanner. (On one Web site, a young Catholic mother admits she picked out a person she knew was being considered for sainthood, pointing out to him that "we could help each other get me my miracle and I'll lobby to get it recognized by the church.")
But what Angel Watch tries to do, Tanner says, is to re-frame what a miracle is: not a cure, perhaps, but maybe a live birth, and if not a live birth at least a chance to create memories and to learn, for example, what music made the baby kick in the womb.In the end, says Lindsey Eagar, it was baby Kylan stillborn at 30 weeks who taught her and her husband about love and life. "We learned that through really hard times, there is a way to be happy, to love the seconds you have of happiness and joy."
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