Everywhere on the walls of their West Island home, there are photos of Josh Landau and Randi Deskin-Landau’s firstborn son, Spencer.
But if not for Landau, dubbed “an extreme photo taker” by his wife, there would be none.
Spencer Landau’s time on Earth was brief — only 10 days after his birth on March 12, 2019.
“And we are forever looking for ways to keep him present,” said Deskin-Landau, 35.
“Spencer is definitely a part of our lives,” said Landau, who visits the grave daily and has a tattoo of Spencer’s foot on his own foot; Deskin-Landau has Spencer’s initials tattooed on the inside of her right wrist.
The couple’s son Samuel, born in August 2020, has the bedroom that was Spencer’s. Initially, Deskin-Landau was troubled by the fact that “as we were redoing it, I felt we were washing away Spencer.” But a cousin of Landau had an idea: creating Spencer’s corner. It holds a chest with items including his hospital blanket, ultrasound and positive pregnancy test — “and it will forever be his corner.”
The Spencer Julius Landau Warrior Endowment Fund, established by the couple for the pediatric intensive care unit at the Montreal Children’s Hospital, has raised more than $150,000. Proceeds of a special Spencer challah — a sweet streusel loaf — being baked this month at Challahland, where Deskin-Landau is a partner, are going to the fund.
Spencer was born with Hirschsprung disease, a congenital condition with bowel obstruction as a main symptom, and he died of septic shock. In what his mother described as “a very unfortunate series of events,” the disease was initially undetected.
The couple has been sharing Spencer’s story in the hope of helping others. Two friends concerned that something was wrong with their babies were spurred to seek immediate medical help, “and thank God they didn’t wait,” said Deskin-Landau. Another Montrealer who read about Spencer’s story gave birth soon after to a son who showed symptoms of Hirschsprung disease; the mother advocated for him to be tested for the disorder — and he had it.
“This is the reason we are able to keep going,” said Deskin-Landau. “We know Spencer has the power to save lives.”
In being vocal about their loss, the couple send “a message that we need to find ways to honour his memory,” said Corrie Sirota, a counsellor and psychotherapist specializing in grief, loss and bereavement. “And that is a great model for me.”
Pregnancy and Infant Loss Remembrance Day, observed Oct. 15 in Canada and elsewhere, is marked increasingly by events like candle-lighting vigils and memorial walks. In Montreal, there will be a Walk of Light in Maisonneuve Park on Saturday starting at 5:30 p.m., and Sirota is organizing a virtual pregnancy and infant loss memorial on Zoom, beginning at 8 p.m. Friday. Participants, including Deskin-Landau and Landau, are asked to bring a memento such as a photo or a footprint, and a candle to light.
Society often doesn’t recognize perinatal loss because it makes people uncomfortable and because people don’t always value these young lives as they do lives lived more fully, Sirota said. People say “ridiculous and hurtful” things to parents, she added, like “at least you didn’t get to know the baby” or “at least you have other children.”
In that way, perinatal loss is a disenfranchised grief, she said. In addition to her private practice, she facilitates Healing Together (run through the West Island Women’s Centre), a free monthly group for women who have experienced perinatal loss, stillbirth and miscarriage, and a support group for men known by the acronym WAM, for We Also Mourn and What About Me? Both groups run online now.
Landau has been a mainstay of WAM since its launch in November 2019. “To know that someone could have a better day because of something I say — that helps me.”
Added Sirota: “The guys will say, ‘I have never said this out loud.’ ” She described how one participant recounted being told by his father, ” ‘You need to take care of your wife now.’ The lack of recognition that they grieve, too, and that they are also struggling is very unfortunate.”
For Deskin-Landau, who suffered a miscarriage in 2017 and another in 2018 and joined Healing Together after Spencer’s death, the group “was a non-judgmental space, and I always came away feeling lighter. It helped me to realize that everything I was thinking was normal, from the grief I was feeling to dealing with friends and family.”
Go to the Pregnancy & Infant Loss Remembrance Ceremony page on Facebook to sign up for Sirota’s Friday event. Host is Myra’s Kids Foundation, which offers free bereavement services for children. More on Saturday’s Maisonneuve Park walk can be found on the Parents Orphelins page on Facebook. For information on the Healing Together group, see wiwc.ca (click on Outreach, and then Support Groups) or email email@example.com. Email firstname.lastname@example.org for details on WAM.