Stillbirth endures as mystery to doctors
(Canadian News)

Stillbirth endures as mystery to doctors
12 times as common as SIDS yet money for research is scant

Brad Evenson
National Post

Thursday, November 13, 2003

OTTAWA - Kyra would be six years old today. With her long fingers, she might be 
playing her first piano recital. Some of her baby teeth would be loose. Her 
Grade One picture would be a keeper. "I watched her come out the birth canal, 
and thought how perfect she was," says her father, Stephen Beneteau.

"I remember wondering, 'Why do people count fingers and toes on newborns, when 
you can see, right away, that they're perfect?'"

As they cradled the pale blue child in their arms in the darkened delivery room, 
Kyra's parents planned her funeral.

Like more than 2,000 Canadian infants each year, she was stillborn.

Doctors can screen DNA for genetic diseases, reach inside the womb to operate on 
fetal hearts, and deliver babies so premature their skin is as transparent as 
Saran Wrap. But science has no cure for stillbirth. It is one of the last, great 
mysteries of medicine.

Most Canadians know about SIDS, the sudden, unexplained death of babies. Yet 12 
times more infants die in their mothers' wombs each year than in their cribs. 
Most of the time, scientists have no idea why.

"I cannot remember the last stillbirth that I have seen in practice where I've 
actually found a cause, and I've had dozens of them in my career," says Dr. Mark 
Walker, a maternal and fetal medicine specialist at Ottawa Hospital.

The official government line is that stillbirth rates are low and falling.

But a Health Canada report to be published next year shows stillbirth rates have 
not budged in a decade. And records are kept so poorly that stillbirth data from 
Ontario, the nation's most populous province, are excluded by Statistics Canada 
because of shoddy quality.

"Even between provinces, there are differences in the way statistics are kept," 
says Dr. K.S. Joseph, a perinatal researcher and associate professor of 
obstetrics at Dalhousie University in Halifax.

Since the early 1990s, stillbirth has been defined in Canada as a fetal death at 
20 weeks or more gestation or with a birthweight of at least 500 grams.

Historically, stillbirths were not registered until an infant was 28 weeks old 
or 1,000 grams. But dramatic advances in neonatal care have pushed back the 
earliest frontier at which a baby can be delivered alive. At 20 weeks, babies 
have functional organs. They have wisps of eyebrows, eyelashes and head hair. 
They suck and kick. They have taste buds.

In a minority of cases, stillbirths are caused by defects and chromosome damage. 
But most of the time, the babies are perfectly normal. Most stillbirths happen 
in the weeks before the official due date.

"It's hard for the parents," says Dr. Walker. "It's a death, a loss, it's an 
emotionally very trying time, and they're left with the uncertainty of what the 
cause [of death] was. The ones you can identify a cause with, theoretically 
parents can say, 'Well the baby would have suffered or it wasn't normal.' But 
most of the time we don't have anything."

Nobody knows how to prevent most stillbirths, or why women who suffered previous 
stillbirths are at increased risk. Yet while six fetuses die each day, the 
government spends substantially less on research into stillbirth than for SIDS 
and prematurity, where death rates are considerably lower. One reason may be 
that most people don't see stillborn infants, so they are easy to forget.

"Once the baby is born alive, people pay more attention," says Dr. Shi Wu Wen, 
an associate professor of obstetrics and gynecology at the Ottawa Hospital.

"If the baby dies in the first year of life, to the parents and the parents' 
friends that may be a bigger tragedy than stillbirth. I think maybe that's the 
perception. So that may be why more attention is paid to SIDS than to fetal 
death."

As their due date came and went, fetal death was the last thing Stephanie 
Burgetz and Stephen Beneteau had on their minds. They were thinking about their 
new life. They had all the glossy books about parenting. Ms. Burgetz, then 27, 
had enjoyed a good pregnancy. "I loved being pregnant," she says. "Everything 
was good."

Two and a half weeks after her due date, Ms. Burgetz's obstetrician said they 
should induce the delivery. He gave her a birth stimulant and sent her home to 
wait for labour to begin. But shortly after her waters broke in the middle of 
the night, Ms. Burgetz's midwife tried in vain to find the baby's heartbeat. As 
an ambulance raced her to hospital, she prayed, "God, if there is one thing I 
could ask for, please make this okay." An ultrasound scan confirmed their fears. 
Kyra was dead.

The couple was stunned.

"It feels like you're dead, or you're dying," says Mr. Beneteau. "It feels like 
getting told you've got cancer or something. I remember going out in the hallway, 
putting my back up against the wall and my knees giving out on me."

For centuries, dead infants were whisked away by midwives or nurses without 
being shown to their parents. Mothers were assumed to be too fragile to stand 
the experience. But in recent decades, that view has changed.

Doctors and nurses at Ottawa's Riverside Hospital wrapped Stephanie and Stephen 
in blankets and presented them with Kyra. "They let us hold her for as long as 
we wanted," says Stephanie.

An autopsy showed that Kyra, outwardly so perfect, had died of Group B 
streptococcal infection. Although Ms. Burgetz had tested negative for the 
bacterium and had no symptoms, it had slipped into Kyra's bloodstream and killed 
her. It was a rare case when an autopsy turned up an explanation, though it did 
not make things much easier.

"I had one job, and that was to bring her safely into this world," says Ms. 
Burgetz. "And I didn't. So I struggled with that."

Women often blame themselves for the loss. To make matters worse, their maternal 
hormones are making them more sensitive and their breast milk is coming in, 
often painfully. Doctors say some women are awakened by the sounds of their 
missing babies crying in the night.

"What we struggled with was, 'Are you parents? Are you not parents?'" says Mr. 
Beneteau. "How do you get through that first Mother's Day, or that first 
Father's Day, when you don't have a child there?"

People did not know what to say. A long-time friend of Mr. Beneteau's wouldn't 
come near them. They felt like pariahs.

Perhaps because parents are mostly alone in their suffering, there is not much 
demand for more research into stillbirth, as there has been with SIDS and other 
causes of childhood death.

Over the past three years, federal research grants for stillbirth amounted to 
about $226,000 a year -- about $110 per dead infant. By contrast, SIDS research 
grants top $500,000 a year -- about 33 times as much per affected child. 
Although this is a crude yardstick, it gives a measure of Canadian research 
priorities.

Until recently, the situation was the same south of the border. Between 1997 and 
2001, the U.S. National Institutes of Health awarded US$50-million in research 
grants for SIDS research -- about US$3,900 per affected child. By contrast, it 
awarded US$442,000 in grants in that time period for stillbirth research -- 
about US$3.32 per stillborn infant.

"They don't even spend enough money to buy a decent condolence card," says 
Richard Olsen, executive director of the U.S. National Stillbirth Society. 
"Babies -- 70 a day crash [in the U.S.]. If we were losing that many people in 
airplanes, we'd sure be doing something about it."

But this situation has changed dramatically, thanks to a U.S. federal employee 
named Margarete Heber. Three years ago, Ms. Heber's baby died at full term. 
Doctors could find no explanation.

"It was one of the worst periods of my life because you leave the hospital with 
no child," she says. "I just cried for months."

Ms. Heber, an aquatic toxicologist at the U.S. Environmental Protection Agency, 
could not believe that babies could die this way in the 21st century. She began 
hunting for answers. She searched the medical literature, recruited friends and 
sought meetings with scientists.

After several months of research, Ms. Heber met Dr. Cathy Spong, recently hired 
by the U.S. National Institute of Child Health and Human Development (NICHD). 
Although Dr. Spong, a high-risk obstetrician, had seen stillbirths in her 
practice, she was shocked by the sheer scale of the problem when she saw the 
statistics.

"I didn't appreciate ... stillbirth causes death equal to that of prematurity 
and SIDS combined," says Dr. Spong, who showed Ms. Heber's report to her 
colleagues. "We looked into it and agreed that stillbirth clearly is 
understudied, and there's an incredible need to better understand it," she says.

"I mean, what's really sad is it's a fundamental issue and we don't know what 
the true incidence is and what the causes are."

At Dr. Spong's urging, the NICHD put stillbirth at the top of its agenda, 
setting aside millions of dollars for research.

Admittedly, a lot has already been done to reduce stillbirth. Rates today would 
be higher if we had not learned to deal with RH incompatibility, gestational 
diabetes and high blood pressure. Canada also puts folic acid into flour to 
reduce the rate of neural tube defects, which may cause stillbirths.

Now the search for causes grows more difficult.

One problem, says Dr. Walker at the Ottawa Hospital Research Institute, is 
assigning a cause of death. Few stillborn infants are given an autopsy in Canada 
because few pathologists have been trained to investigate fetuses. Under rules 
that illustrate the difference between miscarriage and stillbirth, doctors do 
not have to ask for consent to autopsy a miscarried fetus. It is considered a 
sample. But parents must consent to an autopsy on a stillborn infant. However, 
many parents are so distraught they won't consent, and most doctors don't like 
to push too hard.

So, cause of death is difficult to determine.

Another possible reason, yet unproven, is that some hospitals may cover things 
up to avoid lawsuits.

Recently, Dr. Wen and his colleagues were surprised when looking into the 
documented causes of death of newborn babies in Canada. Generally, about a third 
such deaths are caused by asphyxia, which occurs when babies suffocate. "But we 
found less than 10%," he says.

"I asked my colleagues the reason and they said physicians may have concerns for 
legal implications."

Since many babies who die in their first four weeks of life are premature, 
doctors can simply say prematurity caused the death, he says. "But if it's 
asphyxia you could find yourself in court," he says.

Dr. Wen thinks something similar may be happening with stillbirth. The problem 
may be that infants are suffocating during labour.

Dr. Jason Collins, a controversial New Orleans obstetrician and president of the 
Pregnancy Institute, a medical research firm, believes up to 25% of stillbirths 
are caused by umbilical cord accidents.

When women sleep, their blood pressure falls, lowering blood flow and oxygen to 
the baby. This can cause babies to thrash around, entangling them in the 
umbilical cord. But because most people are asleep between midnight and 6 a.m. 
they don't notice, says Dr. Collins, and that's when most babies die. And that's 
a solvable problem.

"Most of these stillbirths, I firmly believe they're mechanical," says Dr. 
Collins.

"They're not caused by infections, they're not chromosomal. Because when they do 
the autopsy, they don't find anything.

"The reason is because when the baby is born, you pull the puzzle apart. When 
the baby is born you pull all the loops and positions away from where they were. 
And if you haven't done ultrasound prior to that, you're not going to see that."

Dr. Collins believes mothers who are 36-weeks pregnant should be given fetal 
monitors to keep track of their babies' heartbeats at night. If a baby goes into 
distress, the mother should simply get up and walk around, which would increase 
blood flow through the umbilical cord.

However, many doctors disagree with this theory. They say many healthy babies 
are born with knots in the umbilical cord. But there is universal agreement that 
fetal monitoring of babies whose movements have slowed down can save lives, 
often by doing an emergency Caesarean section.

"We don't have many stillbirths when we're monitoring [the mother] carefully, 
although we still have them," says Dr. Walker of the Ottawa Hospital. "The ones 
that you get broadsided by are the ones where you have a perfectly healthy 
couple, they get to 38 weeks and have decreasing movement and then the baby's 
dead."

There is also general agreement that stillbirth is no cause for blame.

Smoking and drug use are only minor risk factors. In most cases, there is not 
much parents can do to prevent it from happening. A previous stillbirth can also 
add to the risk, a fact not lost on Stephanie Burgetz when she became pregnant 
again. In her case, knowing what caused Kyra's death might have helped. Doctors 
induced her two weeks before her due date and dosed her with antibiotics. She 
and Stephen now have two healthy sons.

These days, when people ask if she has children, she says, "I have two boys." 
Only those who get to know her find out about her daughter. "Certainly Kyra was 
a person to us," she says.

"We can't just shuffle that off and say it never happened."

bevenson@nationalpost.com