Five months into her pregnancy, Claudia Wong knew it was normal to feel uncomfortable at times. But he couldn’t shake the feeling that something was wrong.
The woman from Pickering, Ont., had already put on about 14 pounds, a lot on her petite body. It had swelled up so much that his legs were “like sausages” when he tried to put his trousers on. His vision sometimes blurred.
Wong, who works in health care, mentioned everything to her obstetrician, but said she was told to “watch and wait.”
One night in October 2019, Wong had painful, burning heartburn that no amount of antacid would dispel. He considered going to the hospital, but “it seemed like another thing that people would have rejected,” he explained.
Instead, she and her husband, Denis Beaulne, checked into a floating spa to relax. When Wong spent some time in the dressing room, the attendant opened the door and Beaulne found his wife passed out in the shower.
When she was five months pregnant in 2019, Claudia Wong became concerned about unusual weight gain, bloating and high blood pressure. (Submitted by Claudia Wong)
They went to a hospital in Durham Region and waited several hours. Suddenly, as Beaulne watched in horror, his wife’s arm shot up violently. Then he started convulsing and foaming at the mouth.
Wong had eclampsia, one of the most common serious complications women experience during pregnancy. It is a blood pressure condition that varies in severity and sometimes leads to death. Wong had many typical symptoms that had gone untreated for weeks.
“To another person, my weight gain may not have been significant. To another person, my blood pressure may not have been significant,” he recalled.
“But for me, I almost died.”
Wong later suffered a seizure due to the blood pressure disorder eclampsia. (Submitted by Claudia Wong)
Most maternal deaths are preventable, experts say
Accidents like Wong’s happen almost every day in Canada, but maternal health experts say they don’t have to. Maternal deaths are less common, but doctors warn that there are no consistent or reliable systems for collecting and sharing information about maternal deaths and closed calls. It’s especially tragic, they say, because most deaths and adverse outcomes are preventable. It also means that mothers in Canada are dying from conditions like preeclampsia that no longer kill women in countries with better maternal health monitoring systems.
Dr. Jon Barrett, chair of the obstetrics department at McMaster University, has been advocating this system for two decades.
“It’s like having a near-miss plane crash at Pearson Airport, or at one of the other major airports and not … trying to figure out: What did we learn from it to avoid next time?”
It’s like having a near-miss plane crash at Pearson Airport and not… trying to figure out: What did we learn from it to avoid next time? – Jon Barrett, chair of the University’s Department of Obstetrics and Gynecology McMaster
Patti Farnan doesn’t know if her daughter Kayla’s death was investigated, if anyone found out about it or if it could have been prevented.
In January 2017, two and a half years before Wong’s seizure in a Toronto-area emergency room, 25-year-old Kayla Farnan had a seizure in a recovery room in the Niagara region.
She had just given birth to her first child by emergency caesarean section.
When her mother heard the code blue and saw medical personnel rushing to her daughter, she knew her worst fears had been confirmed.
Kayla Farnan had high blood pressure, headaches and nausea during her pregnancy, according to her mother. (Submitted by Patti Farnan)
Kayla’s pregnancy had been difficult, she said. Her daughter often complained that she did not feel well and had frequent headaches, bloating and nausea.
“I was worried about her,” Farnan said. “I had a feeling that things were not right.”
Kayla’s blood pressure was also high and she was told to monitor it, but she was never put on medication, her mother said.
Like Wong, Kayla had been preeclamptic and undiagnosed. In her case, she developed HELLP syndrome, one of the most severe forms of preeclampsia. HELLP stands for hemolysis, the destruction of red blood cells, elevated liver enzymes and low platelets. A blood clot the size of a baseball had formed in his brain.
The family only learned of Kayla’s diagnosis after she was sent to a trauma hospital for emergency brain surgery.
“And then we started researching HELLP and it ticked all the boxes,” Farnan said. “I could not believe it”.
Kayla never regained consciousness after brain surgery. A week later, the family made the devastating decision to withdraw life support.
Looking back, Farnan wishes she had been more forceful in her demands that Kayla receive closer medical attention.
“Be careful with your daughters,” he said. “This needs to be taken seriously. Someone died. And I’m sure she’s not the only one.”
Patti Farnan wonders if her daughter Kayla’s death could have been prevented. (Chelsea Gomez/CBC)
Some women’s deaths go uncounted, doctors say
Kayla Farnan isn’t the only one. According to Statistics Canada, 523 women died from complications of pregnancy or childbirth between 2000 and 2020.
But the count of maternal deaths in Canada is so incomplete that Dr. Jocelynn Cook, chief scientific officer of the Society of Obstetricians and Gynecologists of Canada (SOGC), says no one really knows how many mothers die during pregnancy or in the months afterward .
She says the real number is probably closer to 800, possibly higher.
She is not alone in her suspicion that Canada is underestimating maternal deaths.
The data for this country are so incomplete that international report The World Health Organization (WHO), UNICEF and others estimate that Canada’s maternal mortality rate is up to 60% higher than reported by StatsCan.
If these estimates are correct, Canada’s maternal mortality rate, while still low by global standards, was in the top third of Organization for Economic Co-operation and Development (OECD) countries in 2017, and it was twice the rate of other income countries such as the Netherlands, Ireland and Japan.
The holes in Canada’s system
Cook explains that there are a number of reasons why a mother’s death might slip through the cracks. Canada’s national maternal death count is calculated from death certificates. A death is considered maternal if it is marked as the death of a pregnant woman or a woman in the postpartum period. But experts told CBC that these forms are routinely filled out incorrectly.
Even what is considered a maternal death is different depending on the province or territory where it occurred.
Some provinces use the WHO definition of up to 42 days after the end of pregnancy. Others count up to a year after giving birth. Others may not count the postpartum period at all.
Only six provinces have mandated maternal death reviews, meaning that if a woman dies in the other seven Canadian provinces or territories, her death will not be investigated independently.
“If we don’t capture information the same way across systems, if we don’t ask the same questions, we’ll never really understand what’s going on,” Cook said.
It has created a checklist to help provinces record consistent information when maternal deaths occur.
“We know from data from other countries that … a significant proportion of these cases are preventable,” Cook said. “And no one wants anyone to die.”
Dr. Jocelynn Cook, scientific director of the Society of Obstetricians and Gynecologists of Canada, is trying to standardize the information collected by the provinces on maternal deaths. (Chelsea Gomez/CBC)
The UK system is a global model
In the UK, the country’s MBRRACE monitoring program has been tracking and researching maternal deaths since 1952. When a woman dies in her childbearing years, the team checks whether she gave birth in the last year, says Dr Marian Knight, a professor of maternal and child population health at the University of Oxford and program leader.
“If we didn’t do that, we would potentially miss half of the maternal deaths that happen in the UK because … if you die by suicide, having a six-month-old baby wouldn’t necessarily be written … on that certificate of death”.
The law requires that maternal deaths be reported to Knight’s team and the results of confidential investigations be widely distributed.
Another UK program investigates near misses. One of his successes has been the virtual elimination of deaths related to preeclampsia, which killed Farnan and caused Wong to have a seizure. That’s because recommendations about blood pressure control and fluid intake were written into national guidelines, Knight explains.
“It has transformed the landscape for women with preeclampsia,” she said.
Picking up lessons from close calls
After suffering the seizure, Wong was flown to a Toronto hospital, where she underwent an emergency C-section.
Their daughter Sophie was born weighing just 750 grams and spent more than two months in intensive care.
Wong’s daughter Sophie was born weighing just 750 grams. (Submitted by Claudia Wong)
As someone living with the trauma of her daughter’s birth and the lasting impacts of eclampsia, which included a retinal detachment and brain changes, Wong wonders if it could have been prevented.
“The worst thing, I think, is the moral damage of seeing that there is something that could work and then knowing that it doesn’t exist here,” he reflected. “Why doesn’t it exist here?”
Studying close cases like Wong’s is the life’s work of Dr. Rohan D’Souza, associate professor of obstetrics and gynecology at McMaster University.
“They can tell you not only what factors led to these adverse outcomes, but also what measures were put in place to prevent mortality and worse outcomes.”
There is no point in having state-of-the-art review systems and maintaining the…