CAROLYN ABRAHAM
From Saturday's Globe and Mail Last updated on Tuesday, Mar. 31, 2009 10:59PM EDT
On the afternoon of Feb. 3, 25 people gathered in the chapel of Smiths Funeral Home in Sarnia, Ont., to honour the passing of Angel Lynzey Burden.
The community sent flowers and cards of condolence. Angel's ashes sat on a table up front, in a decorative urn half the size of a coffee cup.
It was a teary farewell, considering no one actually had known the deceased, so Pastor Jay Black could not offer the comfort of memories to be cherished. Instead, he described a future that would never be – no baby showers, no first birthday, no need for the newly bought bassinette, no frilly dresses.
Dresses, because, at the time of the service, everyone assumed Angel had been a girl. At seven centimetres in size and a mere 20 grams, not even the pathologist could be sure.
It was only days later, after the funeral and the wake held with sandwich trays and crudités at the Burden home, did lab results reveal that Angel was actually a 13-week-old male fetus, who, after he was miscarried, fit easily in the palm of his mother's hand.
“I tried to look, but there was nothing to indicate he was a boy,” said his mother, Tina Burden, who is glad she and her husband, Allan, picked a unisex name. “But … even at 13 weeks he had fingers, he had long feet, a mouth, ears, eyes, toes. To me, he was my baby and shouldn't be tossed aside like he was nothing.”
A few weeks earlier, an ultrasound had told the Burdens that they had lost the pregnancy. After that, on Jan. 25, Ms. Burden, 35, suddenly began to deliver while she and her daughters, 11 and 2, were visiting the children's grandmother. At the hospital, nurses told her about the hospital's group-burial service for early-pregnancy losses. But Ms. Burden said no: “I wanted my own personal funeral, to grieve my child in my own way.”
It's a sentiment shared by an increasing number of would-be parents. Miscarriages end roughly 15 per cent of pregnancies for women in their 20s and as many as one in four for women over 35. Most happen at home, behind a bathroom door, and couples grieve privately. Hospitals traditionally treat the “early products of conception” as medical waste, bundling them in biohazard bags to off-site incinerators. Under vital-statistics laws in most provinces, any pregnancy that ends before 20 weeks is a non-event – no birth or death certificate, medical investigation or formal burial necessary.
Yet across Canada and in other parts of the Western world, the modern miscarriage has birthed a new and potentially incendiary brand of perinatal bereavement.
A growing number of women and their advocates, many of them staunchly pro-choice, are pushing for the formal recognition of the miscarried fetus as a symbol of their grief and loss. In some cases, they're seeking out these rites even when, for medical reasons, they have chosen to terminate the pregnancy.
But the fetal funeral could be a Pandora's Box. Some graveyards and funeral-home staff have been reluctant to bury remains for which no burial permit can be issued. Medical staff worry it may push patients to dwell on losses they would rather forget. More profoundly, holding funerals for fetuses raises implicit, uncomfortable questions about when life begins.
Those who oppose abortion have long fought for the respectful burial of human fetuses in acknowledgment of their personhood. Can society simultaneously agree to mourn the early fetus and still sanction its destruction? Could the desire to recognize formally the death of a fetus – which has no legal status as a life – reignite the abortion debate?
“This trend of ritualizing grief … will be watched with enthusiasm and pleasure by those who want to restrict women's reproductive choices, and watched with concern by those interested in preserving women's reproductive liberty,” predicted Arthur Schafer, director of Professional and Applied Ethics at the University of Manitoba.
“Anything that encourages us to view early-stage pregnancy as personhood could impact the law on the choice to terminate pregnancy and on embryonic stem-cell research.”
Indeed, the Campaign Life Coalition, the political wing of Canada's anti-abortion movement, considers the trend a sign of “society's progression.” Jim Hughes, Campaign Life's national president, recently attended two funerals for fetuses miscarried before 20 weeks. He applauds the trend, regardless of whether those involved consider themselves pro-choice. “This is their little shot at recognizing this was a human being that was a part of their family.”
The people supporting fetal funerals – some of whom are lobbying government officials to help make the rites more readily available – feel their efforts should have no impact whatsoever on the legal status of life before birth. (Tina Burden, for example, says that she is generally pro-choice.) They say that being pro-choice should include allowing women to choose how they view the potential life growing within them and how to treat its loss.
“It is not a mourning of the entity, per se, but the emotional investment already made in the idea of that child and planning for that potential life and the future,” said Lise Ferguson, executive director of Perinatal Bereavement Services Ontario (PBSO), a non-profit charity that has taken a lead role in educating health and funeral staff on the issue.
She says the trend is a reflection of the contemporary realities of pregnancy, in which science has given prospective parents new windows through which to view their developing children.
A similar trend has emerged in the U.S., combined with efforts to have certificates of birth, not just death, issued for stillborn babies. In February, the Royal College of Nurses in Britain issued a revised position paper calling for the sensitive disposal of all human fetal remains regardless of their gestational age. Municipal officials in Lombardy, Italy, have reportedly passed a new law that will allow the burial of a fetus at any age.
Maureen Colford, a Toronto woman who has suffered several miscarriages and become a champion of the cause, wants society to get over its political squeamishness.
“Funerals are for the living,” said Ms. Colford, who even raised the issue with front-running candidates at last fall's Liberal leadership convention. “Yes, it touches on the political question of when life begins, but women deserve to be treated with kindness. … If I want to think of it as a baby, name my baby and have a burial, I should be able to do that.”
For Tina Burden, it was Marilyn Lau, the Bluewater Health hospital's manager of chaplain and pastor services, who reassured her with that option. Relatives were there when the nurses brought Angel to the room, in a little box, wrapped in soft gauze and a knitted blanket. “It was so comforting to know … that they would be caring enough to do this,” Ms. Burden said.
The Burdens decided on a cremation, although funeral-home staff warned that he was so small there might be no ashes to collect. In the end, they received a modest sprinkling in the tiny urn that now sits on their living-room wall unit.
Ms. Burden can't bring herself to bury Angel. “Say if I move to Nova Scotia or something and I can't see him any more?” she said.
Law is silentThe health system and funeral industry have responded in earnest, organizing the cremation and burial of fetal remains hardly bigger than dragonflies. They're tweaking definitions of medical waste, taking plaster casts of fetal footprints, snapping pictures as keepsakes and setting out immature bodies in jewellery boxes and seashells for viewing. Several cemeteries have dedicated special plots for fetuses lost in early pregnancy.
In the past four years, perinatal grief counsellors have trained nurses, hospital staff and more than 1,000 funeral home directors in Ontario alone.
“It went from not being on the radar to being an issue,” said Joseph Richer, registrar of the Board of Funeral Services of Ontario, the industry's licensing body. “There's definitely an increase in the number of people who want to celebrate the life of a baby who didn't survive past that 20-week gestation.”
It never used to be this way. Back when James Cardinal started in the bereavement business 25 years ago, not even stillbirths prompted traditional funerals.
“Twenty years ago, you never saw the mother,” said Mr. Cardinal, owner of Cardinal Funeral Homes in the Toronto area. “The father or the uncle would come in, they didn't want any fuss made. … It was quick and quiet, like a backroom deal.”
But over the past decade, the deal has changed dramatically. In part, he says, it's because funeral directors have become more interactive with families in asking questions and offering options.
Joanne Bunton, a community-outreach co-ordinator for Jerrett Funeral Homes, part of the Dignity Memorial Service Providers chain, recalls that she began to see these couples some time in the late 1990s. One in particular stands out. The couple came to her when she was apprenticing as a funeral director, cradling the body of their stillborn baby, which they had retrieved from the depths of a hospital pathology department.
“Isn't there something you could do for us?” they pleaded.
Ms. Bunton made a plaster cast of the infant's footprints. Soon, word spread that she was the person to see for a keepsake after a miscarriage.
“People just started coming to me,” said Ms. Bunton, who still spends her spare time crafting tiny caskets and urns on her kitchen counter.
She eventually joined the board of PBSO, which started in 1993 to support people who lose pregnancies or infants. In the past four years, PBSO, which counsels about 800 couples a year for free, has invested particular effort in the issue.
“After a miscarriage, people often say their friends or family even don't understand why they can't just ‘get over it,' or that, never mind, they can have another child,” she said. At PBSO, the mantra is “a loss is a loss, regardless of gestational age or circumstances.”
Since most provinces do not recognize the fetus as a person until after 20 weeks gestation or 500 grams in weight, Ms. Ferguson said, hospitals and funeral officials often feel that they are not supposed to treat pregnancy losses before 20 weeks as deaths.
“But the legislation doesn't say you can't do this or that with a baby under that age – the law is silent on this issue,” Ms. Ferguson said.
Typically, the prospective parents never see what happens to the fetus. When Valerie Diren-Lear lost her pregnancy at 19 weeks on Christmas Day, 2001, she was able to hold “a fully formed little girl” in her arms. She and her husband, Peter, were so devastated that when the nurses said they would take care of everything, she thought, “Yes, that's what I want – someone else to take care of everything,” she said.
“You don't think that means, ‘We are going to burn your baby along with the trash.' ”
But a few weeks later she learned the remains of the daughter she named Sophie Rose were incinerated with general hospital refuse, “with gallbladders and amputated toes, or whatever … and the ashes were sent somewhere up in Northern Ontario. I felt awfully guilty. … I let them do this thing to my baby.”
A PBSO volunteer, Ms. Diren-Lear often describes her experience to hospital staff in the hopes others will be spared the same fate. But more than that, she wants a standardized policy that would set out in writing the burial or disposal options open to women who miscarry in every Ontario health-care facility.
“But it's a difficult topic,” she acknowledged. “We met with our MPP and he didn't want to touch it because it was too close to the abortion topic.
“I'm not religious,” she stressed. “But I think it should be up to the parents to decide what to do with the life they started. … Even at two weeks, it's not ‘nothing.' It's all your hopes and dreams.”
Boon for funeral homes
Hospital chaplain Marilyn Lau suspects society has been slow to recognize the sorrow of early miscarriages in part because the psychology of grief is barely out of its infancy. “Death and dying are not well taught in medical school,” she said. “Not until the last 20 years has the literature on grief appeared.”
In 2001, Ms. Lau's predecessor, Elaine Walker, inspired by stories like Ms. Diren-Lear's, introduced one of Canada's most elaborate policies on handling hospital miscarriages at Bluewater Health, which encompasses three community hospitals in Sarnia and Petrolia, Ont.
Bluewater now offers women who've miscarried three options in writing, in co-operation with two local funeral homes and the Resurrection Cemetery, where a special group plot has been designated for the remains of pre-20 week losses.
They can have the hospital arrange the burial, take care of funeral arrangements themselves or take the traditional option of having the pathology department discard the remains (which doctors insisted remain an alternative).
When patients elect to have the hospital arrange burial, Bluewater transports the fetal remains to the cemetery once a month and, twice a year, the hospital holds a graveside memorial service. Sometimes, Ms. Lau said, couples who suffered miscarriages 20 or more years ago have turned up, saying they're grateful to have a place to remember their loss.
Most hospital delivery wards now have programs in place to handle the issue sensitively. But patient advocates still have problems outside of obstetrics departments.
“Sometimes the loss happens in the emergency department or in day surgery … and there are big gaps in awareness,” Ms. Ferguson said. “The very nature of emergency departments is … to get people through as quickly as possible.”
While sensitizing medical staff remains an ongoing challenge, winning over the funeral industry has been considerably simpler: “There is no shame to say that this is a market the funeral industry can tap into,” Ms. Ferguson said.
“This is potentially a great business for them, with increasing numbers.”
In fact, when PBSO first contacted the Board of Funeral Services of Ontario three years ago, Mr. Richer, the registrar, was surprised to hear the issue might pose a problem. “If anyone wants to celebrate a life, no matter how old, they can,” he said. “You don't even need a body.”
Besides, Mr. Richer readily agreed, “This is an opportunity for business – why would they say no?”
Cardinal Funeral Homes, for example, now supplies kits to five Toronto-area hospitals that include a brochure with burial options for couples who miscarry.
Even in the town of Brandon, Man., population 45,000, funeral director Brent Buchanan said he has seen the popularity of funerals for fetuses grow in the past three or four years.
Mr. Buchanan, a 25-year veteran of the industry, along with another funeral-home operator and the Regional Health Authority have made a deal to handle the “products of conception” up to 20 weeks. Families can arrange their own funerals or be part of a group service the hospital holds twice a year, in which all the fetuses are cremated together and buried in a plot provided by the City of Brandon cemetery department, followed by a hospital luncheon for the 40 or so people who attend.
“We're trying to meet a need that's never been met,” Mr. Buchanan said. “I think it's a realization that this product means something and in the past it was just regarded as a piece of flesh, and there's a realization that it's not a piece of flesh – it's a child to a parent, as soon as conception takes place.”
‘Don't look'
For five years, Manuela Held and her husband tried to have a baby. They underwent rounds of fertility treatments and Ms. Held, a 40-year-old marketing executive in Vancouver, detailed their struggle on a popular blog that at its peak received 3,000 hits a day.
Then, quite unexpectedly last October, she and her husband conceived naturally. They were ecstatic, but cautious. She had miscarried four times before and so, with a Doppler ultrasound device at home, they listened to their baby's heartbeat everyday. They nicknamed the child “Shoelet,” in honour of Ms. Held's self-described footwear fixation.
But 18 weeks in, they learned their daughter had Down syndrome and a heart problem, and while they waited for the amniocentesis results, she died.
“We were absolutely completely devastated. At five months, we were invested in this child. We had been going out and getting things. We had started fixing up the nursery and buying clothing.”
The staff at BC Women's Hospital asked if she wanted to see the remains after the delivery. At first, determined to cling to the idyllic vision of her child, Ms. Held didn't even want a glimpse: “I kept saying to my husband, ‘Don't look at her, don't look at her.'”
The staff asked if they could help make funeral arrangements and Ms. Held asked only that she “not be treated as medical refuse.”
“I'm actually pro-choice,” Ms. Held stressed, “but regardless of what the law might say, or what any religion might say, and I'm not religious at all, this was a baby to us. In our heart and soul, it was a baby.”
Sixteen hours later, they left the hospital, but made it only two blocks before Ms. Held “was hit by absolute panic. … I felt sick, having left without seeing her, without holding her…”
They turned back. “We met at the hospital chapel, not because we're religious, but because it was a quiet, respectful place.”
The staff brought them “Shoelet” – whom they named Georgia Rose – in a “teeny, tiny basket. She had on a little nightie and a bonnet and a flannel blanket.” Instinctively, Ms. Held found herself reaching down to loosen the ribbon of her bonnet beneath her chin, worried it might somehow be uncomfortable.
“We sat and talked to her and sobbed and told her that we loved her and how our lives would never be the same without her. ...
“As horribly painful as it was, we cherish those memories,” Ms. Held said as she wept, “because for that brief, brief period of time we were a family, and we had a chance to show that we loved her.”
In the end, Ms. Held felt compelled to hold a funeral. They cremated Georgia Rose and placed her ashes in a small urn her husband made from a hunk of curly maple driftwood he had found the weekend he had proposed to Ms. Held. They kept the ashes at home in Squamish until this month, when the snow melted and they could hike up a nearby mountain and bury her on the peak they can see from their house.
Ms. Held rejects the idea that the advent of fetus funerals could compromise the pro-choice movement: “How is this still not a matter of personal choice? If I call this a baby, you call this a baby. If I call it a fetus, you take your cues from the person who has suffered the loss. We have to separate legalese from human emotion and decisions.”
Investigate miscarriagesMs. Lau observed that if a couple sees the fetal remains of their child, they are much more likely to want a funeral, “or any ritual” that might be helpful.
Only a few decades ago, society tended to see science as infallible, and “rituals were seen as archaic,” said Walter Podilchak, a University of Toronto sociologist. But with the growing sense that scientific reason cannot give meaning to many life experiences, and in the absence of religion, personalized rituals have gained increasing prominence. If pregnancy became medicalized in the 20th century, Prof. Podilchak said, the fetus funeral might be “like home births, an attempt to take back the rituals of birth.”
Critics often view such trends as narcissistic. Mothers and couples holding a funeral after a miscarriage “risk being seen as decadent for investing so much in themselves and their suffering.” But public rituals create support networks “through which we can get through some really horrific episodes in our lives.”
But pregnancy and birth always have been events surrounded in ceremony, religious or otherwise – a baby shower, a baptism, a bris, a dad handing out cigars. And technology has brought its own rites of passage to the event, fostering a form of prenatal bonding never before possible — home hormone tests that tell you when you're ripe to conceive, the positive home-pregnancy test saved as a souvenir and that first shadowy picture of Junior posted on the refrigerator door, taken in utero by ultrasound.
“Technology has definitely played a role,” said Prof. Schafer, the University of Manitoba ethicist. “Psychologically we feel a more intense attachment because you can see it and you see it as your baby as opposed to a mass of fetal tissue.”
The emergence of the fetal funeral also mirrors the shift in the modern demographics of childbirth. The number of women having their first child over the age of 30 has jumped nearly 50 per cent in a decade, according to 2004 numbers from Statistics Canada. And for women over 40, the miscarriage rate can climb higher than 50 per cent. The national birth rate, meanwhile, hovers below 1.5 children.
As Mr. Richer sees it, fetal funerals are a generational phenomenon. When a mother who might have 10 children or more miscarried, no one spoke of it. “Whereas today, the family units are smaller,” he said, “The mother may be 38 years old and the clock is ticking, and they're saying we want a child … and that child becomes more precious.”
For Maureen Colford, the lack of scientific understanding behind the causes of miscarriage only heightens her sense of loss. She believes the public recognition of an early loss is necessary not just for emotional reasons, but for medical ones.
On a grey March afternoon, she was on her knees hunched over the cemetery plot where she has buried three miscarried babies, digging furiously to reveal the gravestone hidden beneath the snow. The Colfords bought the plot at Toronto's historic Necropolis Cemetery in 1998 to bury Matthew, lost at 21 weeks. No one objected to his internment. But in 2003, when they tried to bury Miranda, lost at 12 weeks, the funeral home balked.
Ms. Colford and her husband Gregory, a lawyer, had to push the issue. The city clerk eventually intervened to confirm that the burial of a pre-20-week fetus was permissible with a pathologist's letter stating the remains were human. In 2005, she was able to bury Georgia, lost at 16 weeks.
Ms. Colford, 38, has two living sons, aged 10 and 7, but in all she has lost five pregnancies. After Miranda, she wanted an explanation. But her miscarriages prompted no medical investigation, nor any official registering of the event.
Each miscarriage, she says, should be treated as a serious medical problem worth investigating. “Why don't we count them?” she asked. “We should be tracking every pregnancy and its outcome. It's important to track them because we need to know why babies are lost. Maybe then there would be fewer miscarriages. … Maybe we would find out about environmental causes.”
Ms. Colford eventually sent Miranda's remains and placenta to a New York pathologist she had discovered online who specializes in post-miscarriage investigations. For $275 (U.S.), she learned she suffered from a clotting disorder that compromises her own health as well as her placenta, a condition for which she now takes an Aspirin daily.
“No one here could have told me that, because they didn't ask,” she said, because such investigations are not done as a matter of course. “But in my case, finding out could save my life.”
Last fall, as a delegate at the Liberal leadership convention, she pitched her position to three of the front-running candidates. They all listened, she said, Liberal Leader Stéphane Dion in particular, with whom she spent an hour on the phone one Sunday morning.
“They all sounded terribly sympathetic, and showed such kindness that I sincerely believe they will help,” she said. “But it's very hard for a politician to commit to anything … especially on such a polarizing issue. Abortion is the third rail in politics – no one wants to touch it.”
Isn't she concerned at all that her actions might inflame the abortion debate? “Aren't we so past that?” she said.
Memorializing abortion
Perceptions of pregnancy, Prof. Schafer pointed out, are particularly prone to shifting: “Basically, when the pregnancy is wanted, it's a baby; but when it is unwanted, it's fetal tissue.
“We're complex creatures,” he said. “We manage to simultaneously occupy contradictory positions.”
This is especially true when pregnancies are terminated by choice. According to the Canadian Perinatal Surveillance System, the rate of stillbirths in the country dropped nearly 40 per cent from the mid-1980s to the mid-1990s largely because of elective, medical terminations.
“Fanatics in any subject will obviously pick things and exploit it,” Ms. Ferguson said. “But I don't see a conflict at all between having a termination and grieving the attachment you had to that baby.”
One Toronto woman in her late 30s agreed to share the story of her decision on condition of anonymity, fearing those who would sit in judgment.
It was her first child and she had pictured having the perfect, natural, midwifery birth. She even planned to forgo the standard ultrasound. But then she spent so many days lying on the cool tile of the bathroom floor praying for the vomiting and nausea to end that her midwife sent her to a hospital clinic at 18 weeks. It changed everything.
Her unborn son was diagnosed as having a fatal chromosomal disorder known as Trisomy 18. “He had hydrocephalus, which had crushed his developing brain. He had major problems with his digestive system, and he couldn't move very well,” she said.
Experts gave a bleak prognosis. She and her husband spent that night on the phone, “calling people, friends, doctors, anyone we could find to explain this to us, to help us figure out how to save our child.
“We had multiple university degrees between us and assumed that, of course, everything was fixable, right? There were no problems on earth that couldn't be repaired in this high-tech day and age?”
But slowly it sank in. They learned their baby, a boy, also had a major heart malformation. He was terminally ill. He would die either in her womb or shortly after birth.
“It was made very clear to us that while the hospital would support whatever choice we made, the end result would always be the same,” she said. “So we made the decision to terminate the pregnancy. Or rather I did.
“It is unkind to force a woman to carry a baby that's dying.”
After taking a drug to trigger a spontaneous abortion, she delivered with hardly the need to push, since he was so small.
“He was tiny and perfect-looking on the outside – unfortunately not so okay on the inside. If I hadn't seen the ultrasound close-ups with the problems, I might not have believed it myself,” she said. “We took dozens of pictures, and the nurse helped us make handprints and footprints. We baptized him, and after about six or seven hours, I finally handed him over to the nurse, for weighing and measuring.”
They held a funeral at their church a few days later, cremated him and buried him in a local cemetery. They invited family and friends and shared food a small restaurant nearby. “Then we went home, without a baby, and tried to figure out what to do next,” she said.
“Some decisions we make are done out of love and kindness, no matter what the world thinks.”
Embryo funerals?
As the fetal funeral makes its way to becoming an established rite of the 21st century, advocates in the field also predict the rise of ceremonies to mark pregnancy losses even before a woman is actually pregnant.
Ms. Ferguson said PBSO anticipates women and couples will soon be commemorating the loss of unused embryos created at fertility clinics: “An embryo in dry ice for four or five years can be as much as a baby as a newborn is to parents,” she said. “It's not weird or bizarre to feel that grief.”
This, Ms. Ferguson knows from personal experience. Since joining PBSO in 2001, she has suffered 11 early pregnancy losses with embryos created through assisted reproductive technology, some after just a few hours. She did manage to carry twin girls to 26 weeks. One lived a few hours, the other six months.
“People can wonder how you can be concerned about embryos after only two hours,” she said. But Ms. Ferguson had planned a career change, and started a college fund for her unborn children when they were mere cells in a dish.
Even when parents choose to discard the embryos, she said, “because they feel they have had all their children, or the couple splits up and practically it makes no sense,” it is still a loss like any other.
“Our technology is advancing faster than our ethical and moral abilities to deal with all the implications,” Ms. Ferguson said. “We can make these little babies. We need to be aware of what it means to be able to do that and what to do when we lose them.”
Carolyn Abraham is The Globe and Mail's medical reporter.
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