‘I felt like I was dying’: How women with postpartum depression fall through the cracks of U.S. health care

Five and a half months after Kristina Dulaney had her second daughter, she developed postpartum psychosis. One day, she spontaneously quit her job as a nurse — which she doesn’t remember doing. Soon after, she began to quote scripture, grabbed her kids, and begged God to save them all. Then she passed out, and her husband called 911.

Dulaney spent two nights in a behavioral health emergency room before being sent to a general inpatient unit that had both men and women in Greensboro, N.C. There, she had a round-the-clock sitter with her to keep her safe. She wasn’t allowed off the floor at all. For two weeks, she didn’t see her kids or go outside.

“Honestly, I don’t remember a lot of those two weeks,” Dulaney says now. “I remember what my family has told me, but it was a very scary and traumatic time. I think that a general inpatient is not even close to what a new mom needs.”

Recovering after weeks of “battling for my mind and my life,” she felt blindsided by what had happened. When she followed up with her obstetrician afterwards, Dulaney told her doctor that she, even as a nurse, hadn’t known that postpartum psychosis was possible. He replied: “That’s a heck of a way to find out about it.”

Navigating a health care system unprepared to support maternal mental health in the time surrounding the birth of a child is, unfortunately, far from a unique experience. About one in seven women suffer from postpartum depression, according to the American College of Obstetricians and Gynecologists, and some estimates for the rate of perinatal anxiety are as high as one in two. More rare are conditions like postpartum psychosis, estimated to occur in one to three people out of every 1,000 who give birth.

The cost of untreated perinatal mood and anxiety disorders, during the period from  pregnancy to five years postpartum, is around $32,000 for each mother-child pair affected. Far worse is the toll that perinatal mental-health issues can take on women and their families. Roughly 20% of maternal deaths after childbirth are from suicide, and in rare cases, women without sufficient access to care and support may harm their children as well.

One of those tragedies rose to national prominence in January when Lindsay Clancy, a mother of three kids in Duxbury, Mass., allegedly killed them in their home and then tried to end her own life by jumping out a window. After her youngest was born, Clancy had sought help for anxiety and depression. She was prescribed 13 drugs for mood disorders during a four-month span; evaluated for (and not diagnosed with) postpartum depression; and checked herself into a psychiatric hospital, from which she was discharged after several days. She was still trying to get help when the deaths occurred, according to media reports.

But despite the urgent need for better care, the systems to diagnose and treat maternal mental health conditions are often lacking. Obstetricians and pediatricians are often the first line of defense in screening women after birth, and since 2017, the ACOG recommendations say that OB-GYNs should screen women for depression and anxiety symptoms at least once during pregnancy. But 50% of women with postpartum depression, the most common complication of childbirth, go undiagnosed. In contrast, 99% of pregnant women are screened for gestational diabetes — a complication that occurs in less than 6% of all pregnant women.

Now researchers are coming up with new ways of predicting who might need extra support — and finding better tools to give women the help they need.

The far-reaching effects of postpartum depression

The neuroscience of depression, anxiety, and other disorders after birth is not fully understood, but there are some predictive factors. If you take 100 pregnant women, about 15 of them will become depressed in the immediate postpartum time period, according to a 2022 study that used data from more than a million women in 138 countries collected via the Flo app. For women with pre-existing mood disorders, that figure is closer to 40 or even 50.

In addition to hormonal changes that may increase the risk of mental-health issues, new mothers are dealing with a lot of potential stressors after giving birth, from changing relationships with their partners to coping with financial pressures of having a new baby and navigating new identities. There’s also the simple fact of sleep deprivation, which is a trigger for many mood disorders.

Mental health issues have ripple effects on the whole family. Studies have repeatedly shown that babies born to moms with depression have slower language development, lower IQ, and other problems.

“A lot of people think, oh, that’s just a problem for the mom and she’s just become a new mom and she’s sleep deprived, and that’s no big deal,” says Jennifer Payne, a psychiatrist and researcher at the University of Virginia who co-authored the 2022 study on risk factors associated with postpartum depression. “The reality is, it is a big deal — not only to her, it’s a big deal to the exposed children.”

Beyond basic screenings

One of the most important ways to improve mental-health support for pregnant women and new mothers is to offer better training to the doctors who see them most frequently. “Addressing mental health should be part of the training for OB-GYNs in a really robust way so they would feel as comfortable with postpartum depression as with pre-eclampsia,” says Tiffany Moore Simas, an obstetrician who helped create a toolkit to provide providers with information about detecting, assessing, and treating perinatal mood and anxiety disorders.

But even basic screening tools may not go far enough.

Courtney Lund, a writer based in San Diego, recalls the trauma she experienced after her son’s birth devolved into chaos. After 28 hours of labor, she was struggling to breathe, an oxygen mask strapped to her face. She was in a full-on panic after a failed epidural and many hours of pain.  Her water was broken without her consent, and then a doctor gave her a sudden, unexpected episiotomy to pull her son out. The NICU doctors were on hand to examine the baby while her body shook in shock from the experience.

Lund recalls feeling incredibly vulnerable — emotionally, physically, and spiritually. “You know, you feel so powerful growing a baby, and then to feel so powerless was a strange juxtaposition of feelings.”

The weeks following her child’s birth were a blur. She struggled to breastfeed, and her mind kept returning to the scary events in the hospital.

At Lund’s six-week checkup with her obstetrician, Lund was asked to fill out a form — the Edinburgh Postnatal Depression Scale, which asks patients to respond to prompts like “I have felt scared or panicky for no very good reason” and “I have been able to laugh and see the funny side of things.”

Lund didn’t feel like herself, but she also didn’t see her experience reflected in the survey, which was designed to diagnose depression or anxiety. As she later wrote: “I hoped the nurse would see something I could not vocalize.”

The nurse told Lund that she might have a slight case of depression, and that she could choose to see a therapist or not. But no one ever followed up again to check on her mental health. It would be years later that she learned that postpartum post-traumatic stress disorder even existed, and that her experiences were actually PTSD — a condition that, left untreated, is associated with health issues ranging from heart disease to substance abuse. Lund says she never received formal treatment. Luckily, “time, journaling, talking, and connecting with others and their birth stories” made her feel better in the end.

The future of postpartum support

In the hopes of creating a better system to identify people who might need more support, Payne is working on a biomarker test. Her research has shown a blood test during the third trimester can reveal two biomarkers — epigenetic changes at HP1BP3 and TTC9B genes — that are associated with an 80% accuracy of people who will get postpartum depression. She is working with a digital health start-up called Dionysus Digital Health to bring the test to market, which she hopes will happen in the next year.

For people who have both biomarkers, Payne says, getting their results during the third trimester would offer them time to build up support systems and medication plans — before they become truly sick. “My hope is that having a test for postpartum depression will decrease the stigma for psychiatric illness in general,” she says.

Other research is trying to improve the connections of people and the help they so desperately need. About 80% of women with postpartum depression are never connected to care, says Natalie Feldman, a clinical fellow in psychiatry at Harvard University and Brigham and Women’s Hospital. “We’ve gotten very good at identifying this problem, and I think we are talking about it a lot more now. But we’re not yet at the point where we can solve it.”

In an effort to provide more supportive care for new moms, Feldman has been focusing her research on digital apps and telehealth for postpartum women. Digital mental health can make care faster, more convenient, and more accessible to people, she says. “Every week on the waiting list for a therapist, is another precious week of maternity leave gone, or it’s a missed opportunity to bond with your baby,” she says.

The idea is not that digital options would replace clinicians, but that new parents who are struggling could make use of online cognitive behavioral therapy programs and apps like 7Cups, a peer support platform that’s been studied as an additional treatment for women with postpartum depression. If a new mom is on a waiting list to see a therapist or otherwise having trouble accessing help, these tools could offer support in the meantime.

In an ideal future world, Feldman says, digital phenotyping — assessing a new mom’s physical movements, speaking patterns, and texting styles — could identify someone who is struggling, so a doctor’s office could reach out with an appointment.

But Feldman notes that it can be hard to balance the need for careful research on digital health tools with the urgency of new mothers who need help now. While “move fast and break things is a great motto for Silicon Valley, but it’s not a good approach to a mother’s mental health,” she says. “On the other hand, in medicine, we say that a new idea takes 17 years to get into practice. For a new mom, where every week has real consequences for mom and baby, 17 years is not helpful.”

The life-changing benefits of broader mental-health support for new moms are evident in a 2019 study highlighted by Moore Simas. That year, the FDA approved brexanolone, the only drug currently approved to specifically treat postpartum depression. Treatment with brexanolone involved a 60-hour infusion in the hospital, which took place over two and a half days. The trials of the drug were placebo-controlled, meaning that women came in for several days and either received the drug, or a saline solution through the infusion.

The improvement in depression scores was marked for both of those groups, says Moore Simas. “And what that says is both of those groups had to be admitted for 72 hours — but they slept. Someone cared for them, someone fed them,” she says. “ So it really wasn’t placebo: they were getting care, but supportive care. It says a lot: we as a community can take care of each other.”

‘I don’t want moms to feel ashamed’

When Kyleigh Wegener had her second daughter four years ago, her baby ended up in the NICU for a short stay — and then everything seemed fine. But around three weeks after giving birth, she began to notice that she didn’t feel like herself. A few weeks passed, and she was sitting at her oldest daughter’s birthday party, realizing that she felt nothing at all. It was then she decided she needed to get some help.

At her six-week checkup, she told her doctor, “I think I might have postpartum depression.” She was given antidepressant medications, and her maternity leave was extended by a few weeks. But when she went back to work, she started having intense panic attacks. “I felt like I was dying,” she recalls.

Wegener eventually was admitted to a partial in-patient mental health program near her home in Michigan, where she was allowed to bring her baby. The support she received helped her bond with her new baby. “I felt like I didn’t know how to be a mom,” Wegener says. “even though she’s my second daughter, and I had no problem after my first, I felt like I can’t be alone with her — I was afraid that I couldn’t take care of her.”

For the past four years, she has been on nearly a dozen medications and in therapy. “I still don’t feel like I have fully returned to who I used to be,” she says. “I didn’t have any kind of mental health struggles like this prior to this.”

Wegener is grateful that she was able to get care. Many women don’t have that access — which may help explain why maternal depression rates are an estimated 40 to 60 percent higher for low-income people.

“I don’t want moms to feel ashamed that they’re struggling with this, because there’s literally nothing that we could do to prevent it,” says Wegener.

In an effort to combat the shame that many new moms feel over mental-health struggles, Dulaney started Cherished Mom, an organization that promotes awareness and education for perinatal mental health and the importance of self-care to new moms, families, and health care professionals. Three years ago, they started Postpartum Psychosis Awareness Day, which occurs the first Friday in May each year.

“It’s the most misunderstood, the most stigmatized, and the least talked about in an appropriate manner — the most severe of the perinatal health conditions,” Dulaney says. There are currently only a handful of specialized in-patient units for postpartum psychosis — located in New York, North Carolina, and California — and none that allow mothers and babies to stay together.

She points out that there may be more women dealing with postpartum psychosis than are captured in official statistics, which only include cases that occur within a few weeks after birth. That would exclude cases like hers.

“Mothers are the victims of an incredible illness that is hardly explainable, with very little to no research around it,” Dulaney says. “And honestly I think we need to do more due diligence to talk about it and decrease stigma, because it really can happen to anybody.”

This story is the first in a series on the U.S. mental health system, supported by a grant from the NIHCM Foundation. Our financial supporters are not involved in any decisions about our journalism.