December 3, 2024
The toll of maternal mental illness in America

For Allison Livingston, panic began to set in during her third trimester. The former elementary school teacher feared she wouldn’t be able to fall asleep — or might not wake up.

Once she gave birth, Livingston’s anxiety grew exponentially. By the time her baby was 8 months old, she didn’t want to leave the house, talk to family, or see friends. Sometimes, she feared she might accidentally or even intentionally harm her child, who is now a healthy 4-year-old.

On one particularly awful night, Livingston was convinced she’d smothered her child after nodding off next to her. “She was totally fine, but I could not calm down,” says the now 36-year-old San Diegan. “I thought, ‘If anything were to happen to her, I’ll take my life.’”

“She was just an innocent baby. I felt so guilty for … having these scary thoughts of harm. I felt like I didn’t deserve to enjoy anything,” says Livingston. “I felt like this is just the way my life is going to be from now on, anxious and unhappy.”

Each year in the United States, 1 in 5 women  suffer from a mental health or substance use disorder during the perinatal period, the time spanning pregnancy and the year after birth.

Postpartum depression — a mix of sadness, fear, feelings of worthlessness, and other often debilitating emotions — is the most common such disorder. But some women suffer from more extreme conditions, including the dramatic mood swings and hallucinations of perinatal psychosis.

Sometimes, the perinatal conditions are so intense that they lead to suicide — or even infanticide.

“She was just an innocent baby. I felt so guilty…. for having these scary thoughts of harm. I felt like this is just the way my life is going to be from now on, anxious and unhappy.”

Allison Livingston

Perinatal mental health (PMH) conditions are the leading cause of U.S. maternal mortality, responsible for 23% of such deaths. Rates among Black and Native American patients are even higher. For comparison, excess bleeding is responsible for 14% of maternal deaths.

“The fact that such a common, treatable medical condition is harming so many women and their families and is causing so many preventable deaths means this is a crisis,” says Wendy Davis, PhD, executive director of the nonprofit Postpartum Support International (PSI), which provides resources and services to families and health care professionals.

What’s more, 75% of people with PMH issues never get treatment. Causes include too little screening and too many maternity care deserts across the country. They also include the intense shame that can deter mothers from seeking help.

Meanwhile, physicians and educators are working to address the massive need for treatment, including by training primary care providers to recognize and treat PMH conditions.

“If we’re taking care of mothers, then we’re taking care of the next generation,” says Samantha Meltzer-Brody, MD, director of the Center for Women’s Mood Disorders at the University of North Carolina at Chapel Hill. “If we don’t, we are threatening the very fabric of our society.”

Why women get PMH conditions — and don’t get help

A complex brew of factors fuel perinatal mental health conditions.

Some women are particularly sensitive to the dramatic hormonal shifts of pregnancy, and some women are genetically predisposed to mental illness. Sleep deprivation, frustrations with inadequate support for breastfeeding, and prior pregnancy-related traumas such as miscarriage also play a role. And then there are the major changes in a new mother’s relationships, responsibilities, and core self-identity.

One’s broader environment also contributes. During the COVID-19 pandemic, for example, participants in PSI’s perinatal support groups quadrupled. The fallout continues, says Davis, as women shaken by pandemic-related birthing experiences now enter into their second pregnancies. Access to paid maternity leave — which individuals from lower-income households and racial and ethnic minorities access less than their peers — is another influence on women’s mental health.

Personal traumas and daily indignities matter a great deal too. “Stress increases the risk of mental health problems, and things like poverty, domestic violence, and racism increase stress,” says Meltzer-Brody.

Experts point to an additional, recent socio-political factor: the 2022 Supreme Court Dobbs decision ending the constitutional right to abortion.

“Some of the highest rates of perinatal mental health issues are among people who desire to terminate and can’t,” says Davis. “For families in highly restrictive states who feel the need to terminate either because of the health of the mother or serious perinatal health conditions of the fetus, it can be excruciating.”

Whatever the causes for their conditions, most women never seek care.

Often, the mental illness itself distorts reality and strangles hope. “Some patients may not even recognize that they are sick,” says Erin Bider, MD, director of the Maternal Mental Health Program at the University of Kansas Medical Center in Kansas City, Kansas.

“Many never had a mental health problem before. Then they start waking up in a panic about their baby, or suddenly get the idea that they should kill themselves,” she says.

Sometimes, patients feel driven to secrecy by the shame and stigma surrounding PMH issues.

“I felt like I was failing because this was supposed to be such a happy time,” says Livingston. “I would compare myself to moms on social media who looked amazing and baked cookies while the baby napped. I desperately wanted to be like them.”

“Doing this work is super rewarding because when I help the patient, I feel like I’m really helping an entire family.”

Erin Bider, MD
University of Kansas Medical Center

Patients may even conceal their distress from those closest to them.

“In my culture, there’s a sense that you don’t talk about feelings,” says Clarissa Garcia, 38, who suffered postpartum anxiety after the birth of her youngest child in 2021. “I was afraid that my mom would think less of me,” says the South Texas high school teacher. “When I finally told her, she said she had felt the same way, but she never told anyone because she was sure they wouldn’t have helped her.”

Symptoms may also go unnoticed in doctors’ offices. The American College of Obstetricians and Gynecologists recommends PMH screening at least three times during the perinatal period, but many physicians still don’t provide it. In fact, fewer than 20% of perinatal patients report being asked about their mental health, according to an analysis of insurer data.

All this leaves families vulnerable. Untreated mental health conditions can result in such problems as preterm delivery, difficulty bonding with the baby, even developmental issues for the growing child. The person’s partner and other children are affected, too, experts note.

“Doing this work is super rewarding because when I help the patient, I feel like I’m really helping an entire family,” says Bider.

Finding care

For women seeking help with PMH conditions, the landscape can be bleak. For example, 1,119 U.S. counties have not one single OB-GYN.

To help fill gaps, medical practices have begun providing staff with special PMH training, often through Postpartum Support International. In addition, the number of clinics that focus specifically on perinatal mental health has been growing. “Unfortunately, the waitlists for those can be extremely long,” says Davis.

One of the larger such clinics, at Northwell Health in Long Island, N.Y., treats about 300 patients annually. There, patients receive a thorough psychiatric assessment, a personalized treatment plan, and a range of services that can include individual and couples therapy.

Livingston says therapy was crucial in her recovery, helping her reframe self-critical and scary thoughts. “I learned to say, ‘This is just a thought. It’s part of my disorder. It’s not me, and it’s not real.’”

For patients needing more than outpatient services, one option is partial hospitalization. In those programs, patients receive treatment during the day but go home at night. Across the country, there are approximately 25 such PMH programs.

Another option is inpatient treatment in a general psychiatric facility — if beds are available. Experts also say such facilities may not be sufficiently attuned to such issues as a mother’s need for lactation assistance or uninterrupted sleep.

Specially designed perinatal inpatient psychiatric programs focus on addressing such issues, say experts. The number of those nationwide: just three. “Generally, if you need hospitalization in this country, you’re in trouble because there is such a shortage,” says Meltzer-Brody.

“The chance to talk with other moms who are having similar experiences can be extremely validating, extremely powerful.”

Khatiya Moon, MD
Northwell Health

Wherever PMH patients receive care, experts say that a key — and often misunderstood — concern is medication management.

“Too often, providers have a reflexive response against medications during pregnancy and breastfeeding. But lack of medication can lead to problems too,” says Khatiya Moon, MD, a Northwell reproductive psychiatrist. “Instead, providers need to balance the risks and benefits for both the patient and baby.”

Soon, doctors will have a new tool for treating postpartum depression (PPD): zuranolone, the first-ever oral PPD treatment approved by the Food and Drug Administration. The medication works much faster than other antidepressants — a couple of days instead of several weeks — which experts say is a great plus for moms hoping to quickly resume healthy parenting. Sold as Zurzuvae, it’s expected to hit pharmacies this month.

Previously, the only medication approved specifically for PPD was an IV treatment that required hospitalization. “This is an exciting advance, but it will depend on access, including what insurance will cover,” says Meltzer-Brody.

Another crucial PMH treatment approach — one that is often overlooked — is group therapy, says Moon.

“Moms can be so busy caring for a newborn that they can wind up feeling isolated. They also can feel so alone because they’re ashamed of their feelings,” she says. “The chance to talk with other moms who are having similar experiences can be extremely validating, extremely powerful.”

Improving care for new mothers

Advocates for people suffering from PMH conditions have been working hard to help them in a range of arenas.

Among recent successes was the September creation of the federal Task Force on Maternal Mental Health, which includes a focus on health equity among its goals. In 2021, the Biden administration launched the free, confidential National Maternal Mental Health Hotline.

Experts have also been working to help fellow providers better understand and support people with PMH conditions.

One key approach is the collaborative care model, which embeds behavioral health managers in primary care practices. At Northwell, for example, patients can get PMH assessment, treatment plans, and referral to higher-level care right alongside their sonograms.

Another major advance are state-funded consultation lines, in which PMH experts provide primary care doctors with clinical guidance and resources. “It’s a great collaboration,” says Meltzer-Brody. “They are the boots on the ground, and we have the necessary expertise to support them.” Providers can also turn to PSI’s postpartum.net consultation service, and they can use its directory to help patients find PMH providers.

“Women need to know that this is real and serious, but we can get help and go on to enjoy our lives and our babies again.”

Allison Livingston

Meanwhile, leaders are expanding education for the next generation of providers.

For example, the current number of psychiatry programs that offer PMH-specific fellowship training — an additional year after residency — is 19, says Bider. That number was zero just 20 years ago.

To help reach even more learners, Lauren M. Osborne, MD, an associate professor of psychiatry and of OB-GYN at Weill Cornell Medicine in Manhattan, has led a national group of educators in creating free online PMH modules designed for self-study or classroom curricula.

But advocates say education — and the empowerment that accompanies it — must also include patients themselves.

“I want moms-to-be and new parents to better understand what’s happening to them,” says Livingston. In fact, her personal experience led her to start working as a PSI resource navigator a few years ago.

“We need to stop making perinatal mental health problems a secret,” she says. “Women need to know that this is real and serious, but we can get help and go on to enjoy our lives and our babies again.”

If you are thinking about suicide or worried about someone else, call or text the Suicide & Crisis Lifeline at 988.

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