TUCSON – When Alison was diagnosed with bipolar disorder at age 18, doctors told her she would never be able to have children because the medications she was taking could reduce her chances of a healthy pregnancy.
Years later, when she began to dream of having a family of her own, Alison began to question her doctors’ advice and took matters into her own hands.
“Back in 2003, when you were diagnosed with this, they would tell you that you couldn’t have children because you would have to be on medication for the rest of your life – and you can’t have children on medication,” she said. “It wasn’t until I got older and realized I wanted to have kids that I realized I had to start reading more about it.”
But Alison, who asked that only her first name be used because of concerns about mental health stigma, did much more than that.
Before getting pregnant, Allison met with Dr. Saira Kalia, a perinatal psychiatrist at the University of Arizona College of Medicine, to explore how she could have children while protecting her health—and theirs.
Today, the 37-year-old owns a styling business and works as a sexual assault prevention specialist in Arizona. She is also the mother of twins who turn 2 in January. But the journey was not easy.
Kalia said Alison’s willingness to seek help was admirable — but unusual.
“A lot of times patients aren’t good at understanding what’s going on,” Kalia said. “There are levels of bias, stigma — limitations that already exist for this population. Then you add questions about if you’re trying to conceive, fertility, pregnancy, postpartum, breastfeeding. The layers just pile up.”
Research shows that mental illness is the most common complication during the perinatal period, often defined as the year before to a year or two after a child is born. One in five people will experience a mental illness during this time, and people of color, those with lower incomes, and LGBTQ people are disproportionately affected.
Mental and behavioral disorders are also a leading cause of maternal mortality in the U.S. In Arizona, nearly half of all pregnancy-related deaths are due to mental health or substance use problems, according to the Arizona Department of Health, and about 98% of those deaths are preventable.
Kalia and Dr. Kathryn Emerick, also a perinatal psychiatrist at the University of Arizona, teamed up to tackle the problem.
The two are working to launch a state hotline next spring for providers who serve the perinatal population. Instead of trying to connect patients directly to psychiatrists, the resource hotline will connect healthcare providers directly to psychiatrists to facilitate patient mental health consultations.
“The idea would be that they could call the line and be connected to a perinatal psychiatrist within two or three minutes, be able to talk about the case and get direct referrals,” Kalia said.
The initiative, funded through Arizona’s health care cost-containment system, will also offer free training for providers across the state who want to learn more about maternal mental health. Later, Kalia hopes to facilitate access to psychiatric treatment when a patient needs an extra level of attention.
Perinatal psychiatry access programs exist in 19 states, according to Dr. Nancy Byatt, a perinatal psychiatrist who started the first such program in 2014 in Massachusetts. Funding models are different. Some programs receive federal grants, while others rely on state dollars.
Bayat said he sees a need and wants to find a way to respond.
“I saw many pregnant women and women in labor. … All these patients were waiting a long time to see me,” Bayat said. “We are providing training, consultation, resources and referrals to build the capacity of professionals already working with these pregnant and postpartum women, thereby increasing access to care.”
Byatt said early research shows the program has changed maternal mental health outcomes in Massachusetts. For example, women who are part of the program are more likely to enter mental health treatment and receive follow-up help.
“When people are served or enrolled in practices served by our programs, it is associated with improved depression outcomes,” she said. “We’ve found that the more people who call, the better the results, so that’s exciting too.”
Most people who need mental health support during the perinatal period never receive treatment. Part of the problem is societal pressure that many new parents, especially women, feel perfect and meet certain expectations, Kalia said. Admitting that you have unpleasant feelings or thoughts often goes against what new parents think they should be feeling.
And while some pregnant people may have pre-existing mental illnesses, Kalia said many others have never been diagnosed with a condition or received mental health treatment before.
“All the issues you had with your own childhood—adverse childhood events, difficult relationships with your mother, abuse, trauma and neglect as a child—when you’re raising a child, there’s no way you can think about your own space,” she said.
The larger problem with access to perinatal mental health treatment, however, may be structural.
The United States is facing a shortage of mental health care providers, and Arizona is no exception. Although most people visit health care providers 20 to 25 times during the perinatal period, many providers are not trained to recognize, diagnose, or treat common maternal mental health conditions, such as depression and anxiety.
Kalia said Arizona’s program will serve the entire state, but will focus specifically on counties with high birth rates or low access to care. Greater access to mental health care during pregnancy and after birth can be life-changing, she said.
“It’s a really uncomfortable feeling as a provider to be like, I wish I knew more,” Kalia said. “I think we’re giving them an opportunity to say, ‘OK, you’ve got this.’
For Alison, access to mental health care during her pregnancy made a difference.
“It was really great to have that extra expert opinion on what I was choosing to do and how I could do it in the safest way for me and my twins,” she said.
Alison recently began advocating for mothers with mental health issues on TikTok and Instagram. She said she wants to show others that it is possible to have a family despite mental health diagnoses.
“There weren’t really that many bipolar moms on the internet saying, ‘Hey, I’m healthy. I’m happy,” Alison said.