|Silence After a Stillbirth Is Deafening, Painful, Parents Say|
|By SUSAN DONALDSON JAMES (@SusanDJames)||Dec 11, 2013, 3:02 PM|
This is the final story in a series about stillborn babies: How families deal with their grief, how friends can help and what medical science knows about why these babies die.
Keirnan's heartbeat stopped somewhere around 26 weeks in the womb. Her mother, Ann Faison, learned at a regular check-up in 2005 that her unborn daughter had died and that the birth had to be medically induced.
The infant had a large tumor nearly the size of her head protruding from the back of her neck, and doctors suspected she had Turner syndrome, a rare chromosomal condition.
"I must say, anticipating the birth of my dead baby was one of the worst moments of my life," said Faison, 49, of Pasadena, Calif.
"What was shocking to me was the experience of the birth itself was so beautiful -- sadness and joy and beauty and horror all mixed in together," she told ABCNews.com. "It's really the richness and breadth or everything in one moment."
But Faison was stunned by the silence that followed the stillbirth -- an event that happens in one out of every 160 pregnancies and affects 25,000 American families a year.
"The nurses took Polaroids -- though I don't remember being asked," she told ABCNews.com. "They gave us a box with a picture in it and a footprints card that was supposed to be signed by the nurse, but no one signed it."
Most hurtful, her parents were "horrified" that she wanted to name the child and talk about her.
"I never questioned naming her," said Faison. "The most difficult of all for me was I had this love for somebody I didn't know. All this love and mourning, and I had no idea who this person was."
When fetal death occurs after 20 weeks of pregnancy, it is called stillbirth, an event that happens 10 times more often than sudden infant death syndrome. Most occur before labor begins, according to the March of Dimes, and a small number happen during labor and delivery.
Women who have had a stillborn report that the pain of loss is often exacerbated by the insensitivity of family and friends who say the wrong thing or worse -- have nothing to say at all.
Although attitudes are changing, society at large often ignores these deaths when what parents want most is recognition that their unborn children existed.
"From the moment we found out what was happening, there was a hush around us from the doctors and nurses that reflected our own shame and horror," said Faison. "Because we lack any conventions around stillbirth, other than the hush that makes everyone feel uncomfortable, and because friends, family, medical personnel are so unsure how to act, one feels ashamed, as if you have done something wrong or there is something wrong with you."
Faison, who went on to have two healthy daughters, now 11 and 7, writes about the inadvertent pain in "Dancing With the Midwives," the 2011 book she wrote to find healing.
"I am often asked by friends and sometimes people I don't know, what to do when a friend or a family member loses a child. How can they help?" she writes.
"We tend to freeze when we hear the news. It brings up our own fears of death, and we don't know quite what to do or say. Even people who have been through grief can be struck dumb or fall into platitudes that are comfortable. 'He's in a better place' or 'You can always have another' are the last things a grieving parent wants to hear."
Jean Brawn, a hair salon owner from Maine, said the insensitivity after the stillbirth of her daughter, Julia, still stings after 18 years.
She was three weeks from a scheduled cesarean section because of pelvic problems with her two previous two pregnancies when the baby's cord became compressed.
"It was a Sept. 7 delivery date and things were going as I thought they should have," she told ABCNews.com. "I don't think the pregnancy was much different [than the others]. I had some stress at work, and my back was hurting."
Although she was close to delivery, Brawn decided to attend the wedding of her younger sister five hours away by car and boat in a remote part of the state.
"My feeling was that's when things took a turn," she said. "During the wedding I was having somersault issues with the baby turning around and kicking. … But post-ceremony, there was no activity."
After the weekend, she saw the doctor, who found high sugar levels and no heartbeat. "It was difficult, there was nothing to say," she said.
"They shuttled me down the hall and it was the technician's task to locate the heartbeat and when she didn't find one, she left the room," said Brawn. "Here, I was in a room by myself. Then she comes back and we go to the doctor's office -- the real one with the books. He was a young doctor in his 30s, and he looked at me and said, 'I don't even know what to say.' To me, this is the worst thing that ever happened.
"I felt so much despair," she said. Her induced delivery was scheduled for Aug. 16, Brawn's birthday.
"With Carrie (her first child, who is now 23), it was not fun and I had a lot of problems, but at least you know there is something waiting for you in the end," she said. "It was very quick."
"A stream of relatives came in who felt they should come," said Brawn. "No one knows what to say, and they get that horrified look on their face and don't say anything."
Brawn went home with a photo of her daughter and had her cremated and the ashes sit in an urn. She and her husband are still searching for a meaningful way to memorialize Julia.
"I am a true believer in fate, and everything has a reason even though we don't know most of them," said Brawn. "At the wedding Carrie was a flower girl and she entered down this super steep, awful hazardous staircase. Carrie slipped on stairs and caught herself. And I wondered for long time, was that a trade-off?"
But she also realizes that had Julia lived, she would have had her tubes tied and her 17-year-old daughter, Emily, a special child who "goes to her own drum" would never have been born.
For a time, Brawn changed her birthday, which she forever associates with the stillbirth. Family and friends know it is a day she feels depressed, takes time out and listens to music.
Today, she tells friends who ask about how to handle a stillbirth to say honestly, "I don't know what to say -- what can I do?" or "Do you want me to listen, to give you a hug? Is there something that you need?"
In the years since the stillbirth, Brawn said one of the hardest memories is the silence. "People closed up," she said. "I left the hospital and everyone went silent -- like the white elephant."