It was Cynthia Cameron’s fifth pregnancy and everything was progressing normally. She woke up early one March morning in her 39th week with a vague but persistent stomach ache and felt the baby move. The Moose Jaw, Sask., mom, her husband, Dan, and four kids aged three to 11 were anticipating the joyful and imminent arrival of a new family member.
Instead, in hospital that evening, Cameron released a gush of bright red blood.
“I thought it was my water breaking,” Cameron says. “But the nurse looked and said, ‘Lie back down.’ Then and there I knew something was wrong. I started crying.” After an emergency ultrasound, Cameron’s doctor broke the news—for unknown reasons her placenta had separated from the uterine wall, resulting in her baby’s sudden death. At that point, says Cameron, her husband was at a complete loss. She wasn’t much better. Doctors induced her labour and ordered her to push, but “I had given up. I thought, ‘What’s the use—there’s no reward for all this effort.’” After three hours of painful labour, and much encouragement from her mother, Cameron pushed out a stillborn son.
“They wrapped him up, put one of those little knitted toques on him and gave him to me. He was just a perfect little boy,” Cameron recalls. “There was absolutely nothing wrong with him—he was just beautiful…. So why did this happen? Why did it happen to me? The doctors couldn’t give me an answer. I was told it was just something that happened. And that hurt.”
Seven days later, on March 13, 2003—his due date—Christopher Cameron was buried.
Fortunately, few Canadian families will face this kind of tragedy. According to the latest Canadian Perinatal Health report, the stillbirth rate has hovered around 0.5 percent of all births for the past decade. Yet with 330,000 pregnancies in Canada each year, that means about 2,000 babies die before birth, 18 times more than die from sudden infant death syndrome (SIDS)—unexplained death of an apparently healthy infant between the ages of 28 days and a year.
Losing an unborn child devastates parents. The suffering is often made worse by the fact that no one can explain why their baby died in the womb. Cameron lost her child just before he was full term, but others lose theirs much earlier in the pregnancy. When that happens, the general rule is to induce labour as soon as possible, both for the mom’s physical and mental health.
Read more: Explaining death to children>
At a time when science can monitor, probe, test and even manipulate fertilized human eggs from the first stage of development to the last, sudden death before birth remains a medical mystery. The good news is that over the past 20 years, Canada’s stillbirth rate has fallen by one-third, mainly due to improved prenatal care and generally healthier moms. What’s more, this country has one of the lowest stillbirth rates in the developed world. But all that is little comfort to the families who unexpectedly lose a child they’re raring to love. For them, finding an explanation for their babies’ deaths should be an urgent scientific quest.
Stillbirth research has never been more active, both in Canada and elsewhere. Yet, historically, SIDS has commanded more attention even though those deaths are far fewer. That’s because “losing a healthy baby months after birth is even more traumatic than a late-term stillbirth,” says Michael Kramer, professor of paediatrics, epidemiology and biostatistics at Montreal’s McGill University. It also may be because, in the eyes of the law, a fetus is not recognized as a full human being. Nonetheless, Kramer believes stillbirth deserves “more attention than it’s received.”
Not least among the many challenges facing researchers is exactly how stillbirths are defined and recorded. Because there is no internationally accepted standard for when a baby is considered stillborn as opposed to miscarried, different jurisdictions use different gestational ages or fetal weights. Data collection is a statistician’s nightmare. For example, the World Health Organization defines a stillbirth as the death of a fetus after 22 completed weeks of pregnancy or when it weighs at least 500 grams. (While moms know that the moving, kicking being inside them is a baby, in medical parlance, an unborn child is a fetus.) In Sweden, the cut-off date is 28 weeks; in the United States and Australia it is 20 weeks; and in Norway it is 16 weeks. In our country, Statistics Canada targets the gestational age of 20 weeks, while Health Canada uses 22 weeks.
“It’s all very confusing,” says Kramer. Nonetheless, poor data quality does not deter him and others from posing some hard questions. No matter what the definition, stillbirth is not a diagnosis—it is a description of when an unborn baby dies. Unlike SIDS, which affects apparently healthy babies for no clear reason, stillborn babes can be either healthy or unhealthy and die for many known and unknown reasons, Kramer says.
In the known category are conditions associated with the fetus such as congenital anomalies, viral and bacterial infections, multiple fetuses and poor fetal growth. These factors tend to lead to early stillbirths. Problems with the placenta, such as separation from the uterine wall which Cynthia Cameron experienced, and umbilical cord mishaps, such as knots and loops, often result in later-term stillbirths.
Researchers also know that a woman’s health, age and weight affect her chances of having a stillbirth. Factors such as high blood pressure, gestational diabetes, smoking, advanced maternal age and obesity all increase the risk of stillbirth, especially after 35 weeks of pregnancy. Many scientists believe that risk peaks when pregnancies go past their due dates. Routine post-term inductions, those performed after more than 40 weeks, and other obstetrical interventions like Caesarians, Kramer says, likely play a big part in reducing the number of stillborn babies.
In many cases, an autopsy is the only way to find out what went wrong. Ken Lim, a maternal-fetal medicine specialist at BC Women’s Hospital, says that, naturally, it’s often hard to convince stunned parents to consent to an autopsy on their dead child. But without the crucial medical information an autopsy provides, he adds, stillbirth data is incomplete and the best course of action for future pregnancies unknown.
While scientists know more about stillbirth than ever, there’s still no consensus on how many have unknown causes. K.S. Joseph, a perinatal researcher and associate professor of obstetrics at Halifax’s Dalhousie University, puts that figure at around 25 percent, Lim between 25 and 40 percent. Kramer, however, believes it could be as many as half. Identifying a risk factor in a mother—such as gestational diabetes or high blood pressure—does not necessarily explain why her baby was stillborn, he says, since many moms with those conditions give birth to healthy babies.
“Probably a lot of cases labelled as known causes are just as unknown,” Kramer says. In cases where a mother’s hypertension or diabetes isn’t out of control, the baby is growing well and then suddenly stops moving, explains Kramer, those conditions can’t always be blamed. “We really don’t know why those babies died.”
For about two hours, Cynthia Cameron stayed in the delivery room cradling her dead son in her arms. Then he was taken away and she was moved to the farthest room down the hall, where for the next day and night, she listened to the typical sounds of a maternity ward.
“I really wanted to get out of there,” she says. “I could hear those babies no matter where they put me and I wanted to go and ask someone to make those babies stop crying. It was driving me nuts. I couldn’t stand it.”
Exploring new areas of research could go a long way in solving some of the mystery. Kramer says scientists have probably identified most if not all risk factors and now need to focus on the basic biology of what happens in a pregnancy, both with a mom and the baby, and on why stillbirth happens in women without risk factors.
Answers will come, he believes, from concentrating on basic science, better epidemiology (the study of the disease) and discovering more about how the placenta functions. Other promising areas of research, Lim says, are immune system autoantibodies (antibodies that attack cells from their own body), subtle chromosomal abnormalities, clotting disorders and infections.
Any pregnant woman who has experienced a stillbirth is automatically considered high risk. She will be monitored more closely, have more ultrasounds and non-stress tests — recordings of the baby’s heartbeat in response to maternal movement and small uterine contractions. Closer surveillance allows earlier detection of problems if they occur and provides the opportunity for early delivery before those problems get out of hand. But how her pregnancy proceeds depends on a host of conditions, not least whether doctors identified a cause. For example, if diabetes was determined to be a factor, then good management of her diabetes will be important. If doctors know a woman lost her baby because of poor blood flow between the placenta and the fetus, that circulatory system will be monitored closely using ultrasound technology. Unfortunately, studies show that women cannot prevent stillbirths by routinely monitoring their unborn child’s movements themselves.
“Once the mother realizes that the baby isn’t moving or isn’t moving normally, it’s probably too late,” Kramer says. “It’s a question of minutes and lots of times a healthy baby will go hours between kicking.”
Other than staying as healthy as possible, there may be little women can do to reduce their odds of having a stillbirth. In many cases, stillbirths are largely inexplicable events. That said, two disturbing recent trends bear notice. While improved maternal health has dramatically lowered the risk of stillbirth over the past two decades, throughout the developed world, mothers are, on average, older and heavier of late. Both advanced maternal age and obesity are known risk factors for stillbirth.
“That could be why we’re seeing a slight blip upwards (in stillbirth rates) from 1998 to 2000,” says Kramer, noting that obesity is associated with a two- to threefold increase in the risk of stillbirth. While it’s far too early to know if the slight increase is the beginning of a trend, he says, “at some point if obesity continues to increase, it may really go up.”
While pregnancy and childbirth will always carry with them elements of the unknown, expectant parents can take comfort from the knowledge that the odds of delivering a healthy baby are very good. “The situation has never been better with regard to pregnancy outcomes in Canada,” Joseph says. “But we still have some ways to go.”
Every family copes with a stillbirth in their own way. Right from the start, the Camerons involved their four children in almost every aspect. Andrew, 11, Jayda, nine, Breigh, six, and Sydney, four, all saw Christopher in the funeral home and kissed him goodbye. At the graveside, with Celine Dion’s song “Fly” playing, they each laid a blue carnation on his casket and released a blue balloon into the sky. Back home they all contributed items to Christopher’s memory box — pictures, cards, letters, a poem, teddy bears and a homemade photo frame.
“You would think something like this would tear a family apart,” Cameron says, “but for us it brought us closer together.”
Last November 16, Cynthia Cameron gave birth to her sixth child, a boy named Jared, by Caesarian section. She had her tubes tied at the same time.
The Grieving Process
There’s no getting over it. As New Brunswick author Beth Powning writes it in Shadow Child, her 1999 chronicle of her own stillbirth experience: “There’s nothing to get over to.”
There’s only going on. But how do you go on after giving birth to a dead child?
“You’re forever changed by a loss like this,” says Della Ferguson, a grief support worker at the Jones Family Centre in Moose Jaw, Sask.
When a stillbirth happens, she says, fathers and siblings need to be fully included in the grieving process. While everyone copes and heals differently, she advises affected people to treat themselves gently, express emotions either through journaling or another creative process, talk with others—especially those who’ve experienced stillbirth—and spend time with groups of safe people who won’t try to fix things.
“People so easily rationalize loss,” she says. “They want somehow to take the pain away, but the bottom line is that it is not theirs to take. It’s amazing what the simple words ‘How hard this must be for you’ can do.”
Perhaps most critical, says Bertha Cohen, a BC Women’s Hospital social worker, is to realize there is no one right way. Unlike Powning’s 1970s stillbirth ordeal where she was never given the option of seeing her baby, many parents today hold, name and take pictures of their dead child. But that level of involvement is not right for everyone. Processing grief, says Cohen, can vary from having a full funeral for the baby to not acknowledging him in any way.
“That’s the key in working with grief—to see what works for people at the time and to let them know that a lot of people who have decided they want to see their baby have found it very helpful and very precious,” Cohen says, “but at the same time for them not to think that is something they should be doing. They need to listen really closely inside to see what it is they really want.”
While emotional support has come a long way since Powning’s horrific experience more than 30 years ago, problems remain. Most hospitals do not have a private space for grieving moms and dads away from the maternity ward.
At BC Women’s, for instance, a woman going through a stillbirth may have to stay on the regular delivery and postpartum ward, hearing the laughter of new moms and dads and the coos and cries of healthy babies.
“We just don’t always have the space to have her in a room where she’s not going to hear that,” Cohen says. ”It’s extremely unfortunate.”
But even there generalizations can be wrong. Cohen recalls one couple who felt it was good for them to be around new families in the hospital because that’s exactly what they would have to face in the weeks and months ahead.