Parents expecting 'rainbow babies' find support with PALS

They're called rainbow babies — children born to couples who have previously lost a child.

As the name suggests, getting pregnant again after a miscarriage, stillbirth, or the death of a newborn is a time when grief and joy co-exist, like sunshine and rain at the same time.

Until now there had been little formal support for parents in Ottawa going on that emotional journey, but starting Wednesday, Roger Neilson House will host a monthly support group for parents in their bereavement program who are going through a rainbow pregnancy.

Carol Chevalier, a pediatric palliative care social worker at Roger Neilson House and CHEO, told CBC Radio's Ottawa Morning that when families become pregnant after a perinatal or prenatal loss, anxieties often increase.

"There's a presumption ... that when a family becomes pregnant again, that everything's fixed, and that now they are able to be afforded happiness," she said.

"But the reality is that they will continue to mourn and grieve their lost child over the course of a lifetime. So many different feelings can come about, such as guilt, worry that this will happen again, worries that if they do something incorrectly during their pregnancy, that something bad could happen."

'A complexity of emotions'

Rachel Samulack, one of the mothers whose experience helped inform the new support group, lost her son Aaron two years ago on the day he was born. An ultrasound earlier in the pregnancy revealed he had no kidneys.

"It wasn't even a month after he had passed away and someone said, 'Oh, you'll have another baby,'" Samulack recalled. "We would never say that to someone who has lost a mother ... but somehow we think it's acceptable to say, "Oh, you'll have another baby,' and that will fix it."

Samulack also suffered an early-stage miscarriage this past November.

"That was the first time we had decided to try again, and so that was very challenging. We thought, OK, we'll go for this again and it'll all work out perfectly, and so after that loss it was like, OK, our plan is shot again."

Since getting pregnant again — Samulack is due in October — she and her and her partner have been on an emotional roller-coaster.

"It's a complexity of emotions," she said.

During the 20-week ultrasound, when the technician told her everything appeared fine, Samulack "just sobbed and sobbed and sobbed, because for me it was terrifying that we would go in and get the same diagnosis [as Aaron] again," she said.

"You don't want to get your heart broken again."

'A very safe place'

Chevalier said parents like Samulack require specialized support.

"Research really speaks to the fact that families who have lost an infant are just as traumatized as a family who loses an older-age child," she said.

"The support group [is] a very safe place for them to be and a place where they are understood, where they can share their emotions with honesty, as complicated as they are, and know that they won't be judged."

The Pregnancy After Loss Support (PALS) group is a pilot program for now, open to families already registered in Roger Nielson House's bereavement program. Drop-ins take place once a month, facilitated by two registered social workers.

Chevalier said they need to test and validate the model before opening it up to the public.