It's about time this got some REAL coverage

From The Toronto Star, December 18/07...

Compassion lacking for women who miscarry

Lack of empathy for those who lose a fetus prompts woman to speak out

Helen Henderson
Living Reporter

Kelly Bodanis knows way too much about losing babies.

After three miscarriages in the last 15 months, she's also too familiar with the insensitive way society, and the health care system, often treat women going through such loss.

While she would rather keep her sorrow private, she bares her own hurt and anger in the hopes her story will inspire other women to join her call for change.

"Women don't come forward because they're embarrassed and in pain," she says. "I want to say to them: `Don't hide and stay home.'"

Ten weeks into her pregnancy, Bodanis had her most recent miscarriage last October in the washroom outside the labour unit at North York General Hospital.

"I felt like I had the plague. Nobody wanted to deal with me," she says of that afternoon spent in the emergency room.

"No woman who comes to the hospital with symptoms of a miscarriage should be left waiting for care in a public waiting room," says sociologist Deborah Davidson, who has had two miscarriages herself and volunteers with Bereaved Families of Ontario.

"A system to assess and improve compassionate care for miscarriage should be implemented," says Davidson, who teaches at York University and has completed a PhD dissertation on the subject of miscarriage.

North York General's chief of emergency medicine says his hospital's policy stipulates that the emotional aspect of miscarriage "should never be underestimated.

"Routine practice is to refer the woman to our counselling and bereavement program," says Dr. Tim Rutledge. That includes the services of a non-denominational chaplain, burial arrangements and the guidance of a social worker, Rutledge says.

"I don't know why that offer was not made in this case," he adds.

Instead, after waiting for hours, Bodanis was informed that her blood tested normal, that she had simply had a miscarriage and should visit her family doctor the next day.

"I wanted to say: `How do you know I don't need any medical intervention now? You haven't even examined me.'"

She had a similar experience 15 months before during her first miscarriage, which involved 12 hours spent waiting and being examined in ER at Credit Valley Hospital.

Heather McGillis, director of nursing at Credit Valley, and the hospital's ER manager Janet Cadigan, both say Credit Valley is among hospitals trying to improve emergency services for early miscarriages. That includes co-ordinating with other hospital services and workshops on perinatal bereavement counselling for staff.

And emergency rooms also should be ready to help, Cadigan says.

"We do our best to help with the emotional loss, too, but that can be a challenge on days when we are crowded," she adds.

Too often "the emotional aspect of miscarriage is swept under the rug. It's left to the woman to deal with it," says Dr. Bev Young, a psychiatrist with the perinatal mental health unit at Mount Sinai Hospital.

That depth of hurt resonates at the British-based Miscarriage Association, which offers information and support.

Every time the subject of miscarriage gets media attention, they receive calls from women in their 70s and 80s who want to talk about their own experiences.

"Society views this as not a real baby," Young says. "So people say the most stupid things and physicians are no different. For a woman, the lost potential has to be grieved.

"Most obstetricians won't even book an appointment before the 12th week (of pregnancy) because losses are so prevalent during that period."

Indeed, miscarriages, technically defined as pregnancy losses under 20 weeks, are essentially nonentities – even when it comes to record-keeping.

Statistics Canada places them in a category called "fetal loss," which also includes stillbirths and abortions.

In 2004, the latest year for which figures are available, StatsCan says 2,551 or 0.8 per cent of pregnancies in Ontario ended in fetal loss. That's down from 5,703 (1.9 per cent) in 1995.

Bodanis, an actor and dancer, and her husband Dan, who has his own jazz band, have a healthy 2-year-old son, Sabian. The toddler was born with the help of the high-risk maternity unit at North York General Hospital, the same unit she went to when she realized she was having her second miscarriage last December.

"That time, I was dealing with an obstetrician, a woman who was so considerate, it was as if she knew exactly what I was going through," she says. Bodanis was given an emergency dilatation and curettage (D&C) procedure to clear her uterus.

"The way we were treated there is the way every woman should be treated," says Dan. So in October, when Kelly miscarried for the third time, they headed back to that unit – only to find it closed.

"You can't have a system where miscarriages are treated seriously only if they happen between certain hours," says Dan.

Health Canada guidelines for hospitals say it is "crucial" that women who experience perinatal losses be "treated with sensitivity and that the emotional aspects of their loss, as well as their physical symptoms, be dealt with," says Davidson.

She notes that, in some ways, hospitals have improved their attitudes toward miscarriage more quickly than society at large.

While the care associated with stillbirths and the death of newborns has improved over the last two decades, "compassionate care for women who experience earlier miscarriage is still wanting," says Davidson.

Nursing students are being taught how to support women but "education for physicians is still inadequate," she says, adding she believes bereavement education should be made an important part of medical education.

"Physicians' reactions to a miscarriage range from a somewhat cavalier attitude to an intense level of empathy," says Neal Rote, a Cleveland immunologist who specializes in the field.

"I suspect the breadth of responses does not reflect medical school training as much as the physician's experiences and, regrettably, gender."

When he counsels people, Rote says "I tell them all the things they're going through – the fear about getting pregnant again, the hate and jealousy you feel toward other people's babies, even your best friend – that's universal."

You can find help online

Well-meaning but misguided sentiments from family and friends – "It was for the best," and "You can still have another one" – add to the anguish of miscarriage, says York University sociologist Deborah Davidson.

"To the woman who grieves the loss of her fetus or her baby, these are not comforting words," Davidson says.

Consequently, many women seek solace from websites. Among those offering support:

Perinatal Bereavement Services Ontario, pbso.ca.

Bereaved Families of Ontario, bereavedfamilies.net.

The Miscarriage Association, miscarriageassociation.org.uk.

Miscarriage Support Auckland, miscarriagesupport.org.nz.

pregnancyloss.info, a site created by Deanna Roy, who lost her first baby at 20 weeks and a twin at 10 weeks.