How perinatal palliative care at Roger Neilson Children’s Hospice is helping families to heal

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In 2020, Julie and Michael Kelly received shattering news.

As a result of a routine ultrasound, they learned the baby Julie was carrying had severe abnormalities. Further testing revealed their baby, Cara, had the life-limiting genetic condition known as Trisomy 18 and would live only a short time after birth — if she lived that long.

The Arnprior-area parents of three older children were devastated. They didn’t want to terminate the pregnancy, which they knew was an option, but they worried a decision not to terminate would cause unnecessary suffering to their daughter.

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“We were lost. We felt really alone and that there couldn’t possibly be anyone else facing this,” Julie Kelly said.

Their introduction to staff at Roger Neilson Children’s Hospice changed everything.

“Once we met them, my husband and I said, ‘This is exactly what we were looking for.’ They treated our daughter as our daughter, not just a fetus. She was Cara,” Julie said.

The couple worked with staff from the hospice weekly for the rest of Julie’s pregnancy. Perinatal hospital coordinator Lesley Sabourin even attended doctor appointments with Julie when her husband couldn’t because of the COVID-19 pandemic, holding her hand throughout.

“That was a huge thing and they were there all the way through.”

Cara lived only 12 hours after her birth, but the family, including their other children and grandparents, were able to spend that together at the hospice with support and care. The hospital even offered a photographer to take family pictures.

Julie said she was especially moved when hospice employees and volunteers stood guard as their daughter was taken out of the building to a funeral home.

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“These people helped to honour her short life. We really do consider them family now,” Julie said. “It was really a beautiful experience for us.”

The Kellys were so grateful for the support that they hold a fundraiser every year in the daughter’s name. So far they have raised $50,000 for the groundbreaking program.

Roger Neilson Children’s Hospice (formerly Roger Neilson House), was the first program in Canada offering perinatal palliative care, a relatively new and growing field. It covers any family whose baby has been diagnosed with a life-limiting condition during pregnancy, up until around 28 days after birth, program officials say.

Members of the multidisciplinary perinatal palliative care team make a birth plan with families and support them from diagnosis through delivery and afterward through bereavement.

That bereavement support is also available for families who lost children without having had diagnoses, as well as those who terminated their pregnancies after receiving the diagnoses. Grief counselling, often in groups, is offered as part of the continuing support, including to grandparents.

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Not too many years ago, parents who lost a child during or shortly after a pregnancy were typically told that they could have more children. There was little focus on the child they had lost. Some say they were never able to see their baby and were encouraged to just get over it.

That attitude left people with unresolved grief that — in some cases — has shaped their lives.

After the Roger Neilson program received formal funding in 2018, a woman contacted the hospice to donate to the program, executive director Megan Wright said.

“She told me that she had a stillbirth 30 years ago and she wished somebody had helped her. This woman decided to make a donation because she was just so happy that, in her community, no mom would have to go through what she went through.”

Former Ottawa Senators captain Erik Karlsson and his wife, Melinda, helped draw attention to the issue and to programs at Roger Neilson Children’s Hospice in 2018, when they spoke publicly about the loss of their son, Axel, who was stillborn.

Among other things, program staff members encourage parents to try to bond with their babies while pregnant and beyond and to make memories, including photographs and time with family.

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Sometimes there is resistance to bonding, assistant medical director Dr. Stephanie Veldhuijzen van Zanten acknowledged.

“There is this misconception that there won’t be any pain if you don’t bond. Other families have taught us that not naming their baby or not holding their baby was something they regretted or not creating memories,” she said. “We know it can be really helpful for the grieving process in the future.”

Once a year, the hospice holds a ceremony attended by families who have been part of the perinatal palliative care program, with each child’s name read out loud.

“It is very important to them because they don’t have things like birthday parties, graduation ceremonies and weddings where they can look forward to hearing their child’s name,” executive director Wright said.

During those ceremonies, she said, parents often mention that they would not have been able to go back to work, or they would have lost hope and relationships without the support, especially from perinatal hospital co-ordinator Sabourin.

Program officials say part of what they do is help parents talk about their children and what happened, and by doing so to counter societal discomfort around talking about death — especially the death of children.

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“This notion that you are going to make people sad by talking about it just doesn’t make sense,” Veldhuijzen van Zanten said. “They are already sad.”

Sabourin said being able to talk about their babies helped lessen the sense of isolation many parents had long felt in similar circumstances.

“We are empowering families and normalizing the fact that this is a significant loss and this grief is real and these feelings are normal.” Speaking about their baby is a large part of that, she said.

The program at Roger Neilson Children’s Hospice has expanded, especially over the past decade. Research is ongoing to better understand how best to help parents.

Wright said officials there had heard from people across Ontario who would like similar services. Programs getting started in London, Ont., and Hamilton have relied on the experience of the Ottawa program.

Roger Neilson Children’s Hospice offers ongoing group support for those who need it, including a program to support parents who lost a child through the anxieties and guilt that sometimes comes with a subsequent pregnancy.

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Without the kind of support the program offers, families struggle with sadness, guilt, isolation and “disenfranchised grief,” Sabourin said.

“That’s a really heavy load to carry if you don’t have a place to share that. Historically, I think many families have dealt with it the best they can, but in isolation. We really believe that we need a community.”

That community continues to be there for the Kelly family.

“Even now, we can call any time and someone is always willing to talk to us and talk through our grief,” Julie Kelly said.

She and her husband help support other parents going through something similar and hold an expanding fundraiser each year to give back.

“Sometimes thank you isn’t enough to tell them what they have done for us and our family.”

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