10:52pm Wednesday 20 September 2017

Suffering in silence over infant loss

As any proud parent knows, it’s almost impossible to resist sharing the little triumphs and joys of children with others, from the first real smile to the first day of school. But what about parents who can’t share these moments—only grief?

According to Statistics Canada, perinatal mortality (loss after 28 weeks of pregnancy, or during the first week post-birth) occurs at a rate of 0.6 percent in Canada. Those figures represent 2,259 babies that died either just prior to, or within days of being born, in 2011. Now, a UBC staff member is working with a nursing professor to help make a difference for those coping with such a devastating loss.

Jens Locher, director of strategic projects in the Faculty of Graduate and Postdoctoral Studies at UBC, says it’s time to speak out about a tragedy that is far more common than most people realize. The founder of the BC Childloss Support Network, he is helping drive and coordinate a campaign to recognize October 15 as Pregnancy and Infant Loss Awareness Day. Locher and his wife lost their first son, Marlon, in 2011, shortly after his birth. Their second son, Tobias, was stillborn in 2012.

“We sometimes refer to it as a secret society,” says Locher. “It’s surprising, once it happens to you, how many people actually come forward and say that either they experienced a loss, or one of their friends or colleagues did.”

Locher wants stillbirth and infant death to be discussed more openly with expectant parents, who are generally not given any indication that such tragedies occur at the rates they do. “Everybody knows about the first trimester risk of miscarriage. And then everyone thinks, ‘Oh, we are past the 12 weeks, we can announce it, because everything is fine.’”

He notes that obstetricians and midwives do talk about birth defects, and offer testing for numerous chromosomal abnormalities, such as Downs Syndrome. “I think what makes it so much harder, when a stillbirth actually happens, is that you are absolutely not prepared at all,” he says. “You have not even considered the possibility that it might happen. A lot of stillbirths, for example, happen just before or at full-term. When you get pregnant, you get offered a million things: prenatal workshops,  breastfeeding clinics. When your baby dies, there is almost nothing.”

While the cause of a stillbirth often remains a mystery, Locher believes greater awareness could help spur funding for research. He points to the example of SIDS (sudden infant death syndrome), where rates have been reduced considerably because researchers were able to identify safe sleep arrangements for infants. “We need to get to a place where we do have some research, and maybe hopefully find ways that people can use to reduce their risk,” he stresses.

Wendy Hall

Wendy HallAs part of his advocacy work, Locher has been consulting with nursing professor Wendy Hall, who, together with Locher, is developing a course for healthcare workers to better support parents going through the trauma of stillbirth or infant death.

“Sometimes people will say things to families like, ‘Well, it’s for the best,’ or, ‘There was probably something wrong with your baby,’” explains Hall. “That’s not helpful. It’s not empathetic. So it’s teaching health care providers to think about how to communicate in a respectful and empathetic way with families, and to deal with their own feelings of loss and trauma. Because as healthcare providers, when a baby dies, we’re also traumatized.”

An important aspect of the training, she says, is teaching healthcare workers to allow parents time with their baby, and to help them create keepsakes. “Sometimes healthcare providers, in their rush to minimize the pain, will want to take the baby away and not think that the family might want to spend time with the baby and say goodbye,” she notes. “Parents might like to have a lock of the baby’s hair or a footprint or a handprint. Healthcare providers don’t always think about taking photos—they don’t think about creating those memories.”

Locher says that, for he and his wife, having time to say goodbye to their sons was an important part of dealing with their grief. He wants to see a time when respectfully encouraging parents to hold their babies, take photographs, and even dress their babies—if they so choose—is standard practice by all healthcare professionals in the field.

“There are certainly healthcare workers that do all kinds of things: they create mementos and memorial boxes for parents, and they get photographers to the hospital. But we want that to be the standard. We know families that had a stillbirth who initially said, ‘We don’t want to hold the baby.’ They got discharged, and they went home with empty hands. I think we can establish something across the board as a minimum standard of care in this scenario.”

Locher also wants people to understand that supporting someone through the loss of an infant or stillbirth is as simple as expressing sorrow, and being there. “People have this tendency to try to find something positive to say, and they want to give you some hope. They say, things like, ‘Maybe there will be another baby.’ But even if there is another baby, it doesn’t replace the one that has died.”

Locher and his wife welcomed a healthy baby girl six months ago. And as much as he is in love with his living child, he stresses that it hasn’t replaced the love he has for the two sons he has lost.

“We celebrate their birthdays, we have routines and rituals that we do for the anniversaries,” he says. “It’s still a parenting job. Even though your baby has died, it doesn’t mean you’re not a parent. Now that we have a living child, our third child, people call me Daddy and they make a big fuss. Well, I’ve been a Daddy since 2011.”

A number of events will be taking place to mark October 15 as Pregnancy and Infant Loss Awareness Day across the country: Walks to Remember; proclamations from provinces and cities, including B.C. and Vancouver; and candlelight vigils. B.C. Place Stadium and Telus World of Science will both support October 15 by illuminating in pink and blue.

For more information and support, visit www.october15.ca.

 

 

 

 

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