Image and blog courtesy of Lisa Marie Buccella (centre)
As a volunteer with Sunnybrook’s Pregnancy and Infant Loss group, I was honoured to share my story yesterday with a group of health-care workers. The purpose of the workshop was to educate and empower health-care professionals on how to deal with patients experiencing possibly the worst day of their lives and the fallout of their loss(es). Here was some of my advice:
1. Never assume.
When I was in hospital after experiencing a 20-week loss, a hospital porter entered my room with a flower delivery. As she set the bouquet near the window, she innocently looked around and asked, “Where’s the baby?”
Years later, in another hospital high risk unit I was in, I noticed butterfly stickers outside some of the hospital rooms. Those stickers symbolized to outsiders that the patient behind the door had experienced a loss. Every hospital needs something like this. And/or, ensure grieving moms don’t have to share the ward with celebrating moms.
2. Never start a sentence with “At least you have…” or “Just be grateful for…”
I tended to attract these well-intentioned comments because I have other kids. But, these comments felt like they were suggesting I wasn’t thankful enough for my current family. Losing one baby, doesn’t require a reminder (from your doctor) that you should “just focus on your babies that are alive.”
3. Please stop with the “how many pregnancies” and “how many live births” questions.
Surely, this information is already in my file. Please take a minute to find the answer before asking me to recount how many of my babies have died and at what gestation. While this might be a routine question for you, it’s triggering to someone who’s experienced loss. There were times that I was asked the same question during every weekly ultrasound, and sometimes, during the same hospital visit by various staff. Please have a better system in place.
4. Have a bad news plan.
Ensure that if bad news is delivered, your patient is going to be cared for when she leaves the appointment, is given written information on what to expect and what comes next because she won’t remember what you tell her. And, make sure she gets home OK (rather than going back to the office — which I did, more than once and, do not recommend). After one of my losses, I was given a backpack of self-care items and reading material and recall being so touched by this act of kindness, from a hospital volunteer versus another loss when I was told by the radiologist to “follow up with your doctor on Monday because he’s probably gone for the weekend since it’s Friday afternoon.”
Pregnancy and infant loss is not a “women’s issue.” It’s a terrible fact of life and it affects parents, families, companies, health-care systems and communities. I’m grateful to finally be in a place where I can share my experience without shame, and hope that through my sharing, I can help inspire small but meaningful changes in our health-care system.