More awareness needed about infant loss resources, says Ottawa parent

After the tragic loss of Erik and Melinda Karlsson's son Axel, one parent who went through similar pain says there's a need for more awareness about pregnancy and infant loss resources in Ottawa.

Rachel Samulack twice experienced pregnancy and infant loss, known as perinatal loss

Rachel Samulack, a parent who has experienced perinatal loss, and Nahal Stoppels, a nurse at Roger Neilson House, told the CBC that there's need for more awareness about the services available to parents mourning infant deaths. (CBC)

After the tragic loss of Erik and Melinda Karlsson's son Axel, one parent who went through similar pain says there's a need for more awareness about pregnancy and infant loss resources in Ottawa.

Rachel Samulack experienced this kind of loss twice.

Samulack told CBC Radio's All in a Day that when she was pregnant in 2013, doctors discovered the baby had no heartbeat when she and her husband went in for an ultrasound at 10 weeks. 

"We were told nothing after the ultrasound. We didn't even get the picture. We were just told to go home," she said.

"I called my family doctor. My family doctor gave us a referral to an obstetrician. We received medication. I went home, took the medication, that started the miscarriage and that was it."

We are... a death defying society. We don't talk about what it's like to lose a child.- Nahal Stoppels , registered nurse at Roger Neilson House

It was pretty cold, she said.

She and her husband were left with this big loss and no emotional support, and didn't know what to do next.

In 2014, they had a successful pregnancy and a healthy baby boy. Two years after that, Samulack was pregnant again and everything seemed to be going well. 

"[At] 20 weeks, we found out our son Aaron had no kidneys. The condition is incompatible with life," she said.

The couple was told to terminate the pregnancy, but they decided to continue with it. 

Samulack and her husband first found out about resources available to them at the Roger Neilson House hospice centre from a friend of a friend — not from any doctors they encountered — and were able to receive counselling and support during that pregnancy to prepare them for the difficult experience ahead. 

"Our son was born in June 2016," she said. "We had 100 minutes with him after he was born."

The family was able to spend 100 minutes holding their son Aaron before he passed away. (Véronique Lalonde)

'A great need for support'

Nahal Stoppels, a nurse at Roger Neilson House, said getting the word out about the centre's services is an ongoing issue.

"This lack of acknowledgement is just resonating across the board here. We know that in the Ottawa region there is a great need for support," she said on All in a Day

The centre is located at the Children's Hospital of Eastern Ontario and offers counselling, emotional support and bereavement care. 

Parents can be referred by doctors but can also self-refer if they feel they need help.

The centre has also just added support groups for grandparents and siblings to its services. 

Raising awareness

Stoppels suggested that efforts to make sure healthcare providers know about the resources available at the centre have butted heads with a society-wide discomfort around talking about death.

"We are, unfortunately or fortunately, a death defying society. We don't talk about what it's like to lose a child and we have words for when someone is a widower, for example, but there's no name for a parent who's lost their child," she said.

"So when that's not a part of our vocabulary, there's a lack of comfort or ease to communicate with parents and to support them. It's often difficult to come to terms with how we can support them."

But Samulack said she believes the sand might be shifting and that public expressions of grief from people like Erik and Melinda Karlsson can help make it easier to talk about perinatal loss. 

"I feel like that's a huge part of the change," she said. 

Samulack is the lead organizer of the Ottawa-Gatineau Butterfly Run, an event that aims to raise awareness about perinatal loss and the resources — at Roger Neilson House and elsewhere in the city — available to those in mourning, at any stage in their experience.

"Regardless of whether you lose that baby at 10 weeks or like Aaron who we lost at 36 weeks, 100 minutes after birth, both of those ... were our children," she said. 

With files from CBC Radio's All in a Day