Though doctors say nearly one-quarter of all pregnancies end in miscarriage, the topic is seldom touched. One support group is trying to change that.
By Raina Wagner
ARIZONA DAILY STAR
They'd picked out her name: Ella Catherine Anderson Cheslock.
They'd readied her nursery, from the matching crib set down to the books in the shelves.
They'd nothing left to do but await her arrival.
Then, less than two weeks before Ella's March 23 due date, Deborah Anderson and John Cheslock went for a routine weekly appointment with their obstetrician. He couldn't find a heartbeat.
Instantly, Anderson and Cheslock became people they didn't want to be:
Parents who'd lost a child.
"Until it happens to you, you don't know how common it is," says Anderson, 31.
Miscarriage, stillbirth and infant death occur all too often.
* As many as 22 percent of documented conceptions end in miscarriage, and experts estimate that up to half of all conceptions are miscarried.
* Eight of 1,000 births end with a stillborn baby - nearly 1 percent.
* In another one of 100 births, the baby dies within the first 28 days of life (excluding deaths attributed to SIDS, or Sudden Infant Death Syndrome).
Despite such numbers, families who have experienced perinatal loss say there's a culture of silence around it - silence that worsens the grief.
"People don't know how to deal with grief in our society in general," says Louise Roth, 33, who lost a baby girl at 20 weeks' gestation in January.
"Miscarriage is something we have a lot of silence about."
Roth and Anderson both found they needed to talk about their losses and their grief. They turned to Footprints Support Group, created for families who've experienced perinatal loss, a category that includes ectopic pregnancy as well as stillbirth, miscarriage and infant death.
The group, a service of Carondelet Women and Infant Services, meets twice a month at St. Joseph's Hospital. Information about Footprints is provided to every woman who's had a perinatal loss in a Tucson hospital.
Saturday the group will hold the second annual Walk to Remember at Children's Memorial Park. The event commemorates the lost children with a ceremony, blessing and balloon release.
Roth has been attending Footprints meetings since last spring. But when she learned of the group immediately after her loss, she couldn't face even a group of supporters.
"I didn't go for the first couple months," says Roth. She and her husband, Greg Pilling, also found out at a routine appointment that their baby's heart was no longer beating. They were never able to determine why the baby died, despite an autopsy.
"There was a part of me that was in denial," says Roth, a professor of sociology at the University of Arizona. "I thought I was going to wake up and it would all be a nightmare."
Denial is just one part of a grieving process that can feel like insanity if you aren't able to talk about it.
"Grief can feel crazy," says the Rev. Wendy Hackler, the Episcopal minister who is one of the founders and co-ordinators of Footprints.
Hackler, a chaplain at St. Joseph's, tells the story of a woman in the group who'd had a miscarriage, yet frequently heard her baby crying.
"She wondered, 'Am I
crazy?' " Hackler says. "No. You're just grieving . . . . All these things that feel so crazy are just a normal part of your grief."
Roth and Anderson, also a university professor, say talking with other families who've had similar experiences has been the most valuable aspect of Footprints.
"Everybody's grieving the loss of a child," says Anderson.
Defining their lost children as just that - children - is something Roth and Anderson discovered that not everybody did.
Anderson says she was so close to her due date that people seemed to understand how tragic the loss was to her and Cheslock. Ella died after a knot in her umbilical cord tightened - a rare occurrence that could not have been detected in utero.
The couple followed the rituals of any parents who've lost a child. They baptized Ella in the hospital, they held her, dressed her and photographed her. They also had a memorial service after they'd cremated her body.
Roth's loss, since it was earlier in the pregnancy, wasn't viewed quite the same way, she says, despite the fact that her baby was categorized as a stillbirth, and she and Pilling had to complete a death certificate.
"Even these losses that happen later are hard for people to grasp," says Roth.
"It may have been a person to you, but it isn't to them in the same way."
Pilling, 33, was most angered by the well-meaning sentiments people sent his way.
"How it was for the best, or it means there's another angel in heaven," says Pilling, biting back his still-fresh anger.
"I just wish people would just say 'I'm sorry' and leave it at that."
Footprints support groups are a place where Roth and Pilling can talk freely about the baby without hearing insensitive comments.
"People there know better," says Roth.
Mina Heinrich, a labor and delivery nurse at St. Joseph's, coordinates the group with Hackler. Both women have been certified as perinatal bereavement counselors through an international organization called RTS Bereavement Services.
RTS - formerly Resolve Through Sharing - adheres to the philosophy that sharing our experiences helps us heal.
"We say healing does not mean forgetting," says Heinrich. "You don't ever forget."
Roth and Anderson attest to that. Both women are expecting babies again - Roth is about seven months' pregnant, Anderson nearly three months along - and they say their healing and grieving process for their lost children is separate from their emotions regarding their current pregnancies.
Now that she's visibly pregnant again, people think they can talk to her as though the new baby negates the earlier loss, Roth says.
"Actually, it's terrifying," she says of being pregnant. "It's very scary, and you don't forget the other baby."
Saturday's walk is meant to build awareness about perinatal loss and to provide an outlet for women who miscarried long ago, when they were simply expected to "get over it," Heinrich says.
"We had a woman who had losses in the 1960s show up" at last year's inaugural walk, Heinrich says. "Back then, they just wanted it to go away. . . . It was a wonderful way for her to say that she had these babies, and they were people."
Two years ago, Arizona was the first state to pass legislation that provided these families with more than a death certificate, Hackler says. Since the losses are legally recognized as deaths after 20 weeks, these families have always had to complete death certificates and make arrangements for the babies' bodies. Now if a woman delivers after 20 weeks' gestation, the family is also able to complete a certificate of stillbirth, a form similar to the certificate of live birth.
With the certificates of stillbirth, they are encouraged to name their children, just as Roth and Pilling and Anderson and Cheslock did. Roth and Pilling wouldn't learn their baby's gender until several weeks after they needed to complete the certificates, but during Roth's pregnancy, they had nicknamed the baby Nutmeg. That became her name. Nutmeg's ashes were scattered in a rose garden on the UA campus.
Anderson and Cheslock gave Ella the name they had always intended for her to have, Anderson says.
"It acknowledges that she was a person, that she had a name and that she was loved."
* Contact reporter Raina Wagner at 573-4332 or rwagner@azstarnet.com. |
