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Professor Christine Jonas Simpson transforms son's stillbirth into groundbreaking research

Professor Christine Jonas Simpson transforms son's stillbirth into groundbreaking research

Stillbirths claim more lives each year than HIV-AIDS and malaria combined

When Christine Jonas-Simpson’s son Ethan was born, there was an eerie quiet in the delivery room, and then a piercing wail, wrote The Globe and Mail's Andre Picard April 13.

“The only cry I heard was my own,” she said somberly.

Ethan was dead, “born still” in the language of grieving parents; “stillborn” in the medical vernacular. The umbilical cord was constricted, essentially suffocating the baby in the womb, a condition impossible to detect with an ultrasound.

Jonas-Simpson, who was almost 38 weeks pregnant, knew her son was dead before she went into labour. When he was born, she held Ethan in her arms, stroking his shock of curly red hair. So did her husband.

The nurses were wonderfully supportive, even explaining to Ethan’s young siblings how his air tube was broken, something that could happen to an astronaut. The family was able to mourn on their terms.

(Jonas-Simpson, a professor of nursing at York University [Faculty of Health], published a children’s book, Ethan’s Butterflies, and produced a series of research papers and documentaries on stillbirth, the latest of which, Enduring Love: Transforming Loss, will premiere in Toronto on May 15.)

[You can also watch the Enduring Love trailer on the Faculty of Health's Youtube channel.]

Unlike Ethan, most babies born still are quickly “disposed of” without being held, named or given a funeral. In much of the world, reproduction is central to a woman’s purpose, so there is profound stigma, and no small measure of blame falls on the mother when childbirth fails to produce a living child.

Newly published data show there are more than 2.6 million stillbirths worldwide each year. The deaths remain largely uncounted, the mothers unsupported and preventive measures understudied.

It is an epidemic – one that claims more lives each year than HIV-AIDS and malaria combined – that quietly unfolds far from the public eye.

The Lancet, in its Thursday edition, has published a series of articles that aim to shatter the silence by examining the staggering toll of stillbirth – emotional, physical and economic – and proposing practical solutions.

A stillbirth, as defined by the World Health Organization, is one in which a baby dies after reaching at least 28 weeks gestation and weighing at least 1,000 grams. In a country like Canada with advanced medical care, it is 22 weeks at 500 grams. (Loss of a fetus before that time is considered a miscarriage or, if the pregnancy is terminated, an abortion.)

There is a common belief that babies who die in utero were never meant to live. Stillbirths have been seen as a form of natural selection, bad luck, the result of witchcraft – lame 17th-century explanations for a lingering 21st-century scourge.

The other myth is that most stillbirths occur early in the pregnancy. In fact, the opposite is true: The longer the gestation, the higher the risk.

The vast majority of stillbirths are preventable.

In wealthy countries like Canada, where high-tech obstetrics are the norm, stillbirths are linked to smoking, obesity, advanced maternal age, and abnormalities in the placenta and umbilical cord.

J0nas-Simpson's research was also covered by PostMedia News April 14 in a story about the prevalence and impact of stillbirths among Inuit communities.

Posted by Elizabeth Monier-Williams, research communications officer, with files courtesy of YFile– York University’s daily e-bulletin.