Look no further than your local drug store’s sympathy card section for a host of euphemisms for death. “We are a death-denying society,” says Dr. Denise Côté-Arsenault. We say people “rest in peace” or “pass away.”
“We don’t want to talk about somebody dying.”
That conversation becomes even more difficult for loved ones — and medical professionals — of parents who lose a child during pregnancy. “Those babies have not been part of society; people haven’t seen them pushed down the street in a stroller. It’s easy to ignore those deaths,” the nursing professor says. “But they are very real to the mother and the father.”
Maybe it’s because she spent the first 20 years of her research career working with mothers who became pregnant again after losing a child. Or maybe it’s because she now studies perinatal palliative care programs, which support parents who know their babies will not survive. But Côté-Arsenault doesn’t shy away from the death conversation — she knows it’s the only way to ensure that life goes on for the survivors.
“When parents lose a baby, they feel the loss of their future,” says Côté-Arsenault. “They thought they would have their whole lives with these children. When you can’t talk about it, it makes it difficult to grieve, which can lead to depression and anxiety – and fear during future pregnancies."
In the photo above, Côté-Arsenault holds items from a hospital memory box for parents who have lost a child. See more photos on UNCG Research Flickr
When Côté-Arsenault came to UNCG seven years ago, she won National Institutes of Health funding to follow 30 parents after they discovered, mid-pregnancy, that their babies wouldn’t live. She and her physician colleague interviewed parents who chose not to terminate through the ensuing months to better understand their experiences, including interactions with doctors and nurses.
Their findings now help inform health providers and the United States’ 136 perinatal palliative care programs – a small but growing field providing care for these parents. “I think most people have the impression that parents try to get on with their lives as quickly as possible and not think about the baby, but the exact opposite can be true,” Côté-Arsenault says. “Many try to make the most of every day. They read to their babies in utero, they play music for them, and they are so thrilled to actually meet their baby at birth, even if their baby dies very quickly.”
Côté-Arsenault’s pioneering research has also helped health providers understand why, when caring for pregnant couples, they should recognize previous losses. “Women who’ve lost a child have specific pregnancy anxiety,” she found, in an earlier NIH study. This anxiety can lead to detrimental outcomes for both the mother and her current child.
“It’s not just the baby that parents are pregnant with right this minute that needs to be the focus,” Côté-Arsenault says. “We need to give much more holistic care.”
Next, Côté-Arsenault plans to travel to Scotland, to study approaches to perinatal loss in a different culture.
“People ask me why I do this research,” she says. “At least 25 percent of all conceptions end in a loss. It’s important to recognize that pregnancy doesn’t always end the way we hope, and these parents deserve the best care we can possibly give.”