Today is World Maternal Mental Health Day and two Barrie moms are fighting to bring awareness to an issue that can often go untreated.
Patricia Tomasi and Jaime Charlebois know first-hand what it’s like to struggle with perinatal mental illness. While many people are aware of the issue of post-partum depression, there is a whole spectrum of mental health issues from conception to when you’re post-partum, including anxiety, obsessive compulsive disorder, bipolar disorder, psychosis, and panic disorders.
“We both lived experience and live nearby one another, but had no idea each other existed until I called Jaime to interview her for an article I was writing several years ago," Tomasi said. "We became fast friends and together began wondering why no one was advocating for better perinatal mental health care."
After hitting too many walls, the pair decided to do it themselves and started the Canadian Perinatal Mental Health Collaborative (CPMHC).
“We thought to go big or go home," Tomasi added.
Charlebois had been working as a labour and delivery nurse when she found out she was expecting her first child. After being diagnosed with hyperemesis gravidarum (extreme morning sickness), causing her to be off work for 10 weeks, she initially fell into a great groove with her new baby.
“When we had the baby, labour was fast (and) the first three months were amazing," she said. "At three months post-partum, I had a major gallbladder attack and went to the ER at 3 a.m. My husband had to wake our baby up and from that time on she never slept again.
"I had a lot of medical issues, and then my daughter’s temperament did a total 180 and I really struggled,” said Charlebois.
She subsequently suffered severe post-partum anxiety and became obsessive compulsive in checking and monitoring her baby’s sleep.
“I became neurotic about keeping journals and buying books about having the perfect baby, which was really hard on my mental health," Charlebois said. "Sixteen years ago, we didn’t know more than post-partum depression, so because I didn’t feel depressed, I didn’t know and didn’t reach out for help. I thought it was just me and that I wasn’t very good at it.”
Looking back, she has a clearer idea what happened, but says she struggled for 18 months until her daughter weaned, at which point Charlebois said she felt like a dark cloud had been lifted and she was able to begin to function like her old self.
Tomasi’s experience was a combination of environmental factors — being a new mom and the sleepless nights that go along with that, combined with a variety of biological factors.
“I had a history of mental health conditions that were never properly assessed or diagnosed. By the time I became pregnant for the first time, I was not flagged or screened," she said. "I never thought it would be an issue because I had no idea I was at a higher risk of developing perinatal and post-partum mental illness."
Tomasi experienced post-partum bipolar disorder after the birth of each of her daughters.
“It didn’t happen right away, but looking back there were signs, like I wasn’t attached to my infant, I was very fatigued, very irritable… but I chalked it up to being a new mom and recovering from traumatic labour," she said.
A few months into her new role as a mother, Tomasi said she began having intrusive thoughts, experiencing symptoms of anxiety symptoms and panic attacks. She reached out to her doctor and took herself to the emergency room, where she said she was told she had nothing to be concerned about.
“The doctor told me, 'You’re too pretty to be worrying about this, just enjoy motherhood.' I was in shock,” she recalled.
Because of that, Tomasi says she was never properly assessed or treated, and those symptoms ultimately developed into post-partum bipolar disorder.
When Tomasi became pregnant for the second time about four years later, she quickly began to educate herself as much as possible.
“I thought what’s the chance it could happen again. … Not only did it happen, but it came on 10 times worse,” she said.
Luckily, Tomasi wasn’t going to take no for an answer this time and decided to be her own best advocate.
“Because I had done enough reading, I marched myself into the doctor’s office and demanded she put me through the the Edinburgh Postnatal Depression Scale," she said. "I had to take my health care into my own hands and ask for medication. The medication did help, but it has left me with 50 extra pounds and no follow-up.”
Through the CPMHC, the pair has been lobbying the federal government to create a national perinatal mental health strategy that would provide direction, policy and funding for improvements to perinatal mental health care.
They submitted an e-petition to the House of Commons asking for a national Perinatal Mental Health Strategy, tabled by Edmonton Strathcona MP Heather McPherson in May 2020.
Unfortunately, their request was not successful, but that hasn’t stopped them. They decided to forge ahead and created a first-of-its-kind survey asking health-care providers across Canada which kind of screening, diagnosing and treatment they’re doing for perinatal mental health, what tools are being used, and how they are ultimately treating patients who have been diagnosed.
“We wanted the survey to be very rigorous, so we received Research Ethics Board approval from University of Calgary … and in October 2020, launched the survey through social media and left it open two months,” said Charlebois.
They received more than 400 “amazing, impactful and strong statements” in response to the survey.
“The result is a culmination of what we know," Charlebois added. "We know women are out there struggling without being screened or treated. This proves that the majority of health-care providers are not trained in perinatal mental health (and) because of that people are floundering and struggling.”
Charlebois and Tomasi started off as “two moms on a mission” for change, but that mission has become much more.
“That mission is ongoing, but we hope that something happens sooner rather than later, especially with the pandemic, because rates of perinatal mental health issues have doubled," said Tomasi. "We know parents are struggling and we know there’s a high cost to society."
Tomasi noted untreated perinatal mental illness costs society $150,000 per mother/child dyad. If properly assessed, diagnosed and treated that cost is reduced to $5,000.
“There’s an economic cost on society, but there’s also a legacy of mental illness that can continue on," she said. "We give a lot of lip service to mental health these days, but if we don’t start where it really matters — at conception and pregnancy — then we are just doomed to repeat the cycle. We need to end the cycle and we hope the government is listening.”
The CPMHC report, Time For Action, containing recommendations for the government on how to improve perinatal mental health care in Canada will also be released today during a free joint Ludmer Centre/CPMHC virtual online symposium.
A review of perinatal mental health best practices from Dr. Alain Grégoire, Dr. Simone Vigod, and others will follow in the afternoon.