Inequity in Maternal Health Care Left Me With Undiagnosed Postpartum PTSD

After 28 hours of labor with my first child, I struggled to breathe. In the hospital, a nurse strapped an oxygen mask to my face. A sea of people stood around me, screaming for me to breathe. Breathing, something we're born knowing how to do, escaped me.

I had no idea this moment would later bring about weeks of enervating postpartum post-traumatic stress disorder (PTSD) symptoms. Researchers estimate postpartum PTSD, often triggered by birth trauma, impacts anywhere from 10 percent to 17 percent of birthing people—but I didn't even know it existed. Limited literature has curbed awareness and symptoms are often misinterpreted as depression or anxiety. PTSD, well-known and well-researched among veterans, has common symptoms including flashbacks or nightmares, intrusive reimagining of past events, panic attacks, or a sense of detachment. Many patients go undiagnosed. Myself included.

My lower-income status didn't help. My husband was in graduate school and we had just moved to a new city. I was juggling three low-paying jobs with no benefits, which placed me on Medi-Cal, California's Medicaid health care program, through a clinic east of Los Angeles. The payout for Medi-Cal patients is lower, so doctors who take it slot these appointments back-to-back to compensate. The first OB-GYN I saw said, "You shouldn't care how you're treated. You don't work. You aren't paying." I told her I had been paying government taxes since I started working at 16 years old, and still was. I walked out of her office and never looked back.

It's no wonder my symptoms went undiagnosed. Poverty is a leading factor in maternal vulnerability in the U.S., according to 2021 data released by Surgo Ventures. Beyond the physical impact of health care disparity for birthing people, maternal depression rates are an estimated 40 to 60 percent higher for low-income people, according to the Georgetown University Health Policy Institute. As a white woman who did not grow up in poverty, I have much more privilege than some. There is staggering racial disparity in maternal health care: Black, American Indian, and Alaska Native women are two to three times more likely to die from pregnancy-related causes than white women, according to the Centers for Disease Control and Prevention. When birthing people of color live in low-income communities, the inequities increase even more.

The OB-GYN whom I ultimately stayed with never got to know me. He sped through each appointment; I barely got a question in. When he told me he wouldn't be in the delivery room, I shouldn't have been caught off guard, but I still was.

My Traumatic Birth Came By Surprise

In the hospital delivery room, my body had entered a panic. I arrived the day before on an instinct of fear—I couldn't feel the baby kick. Over the next 28 hours I was pumped with Pitocin, Demerol (or possibly Fentanyl), antibiotics, and a failed epidural. My water was broken without my consent. I could not move my body but I could feel substantial pain. I forgot how to breathe.

In the final moments before my baby's birth, I yearned for comfort from a familiar face at the other end of the hospital bed. Instead, the on-call doctor, whom I'd never seen before, took out a knife and sliced me without warning—a violent, bloody episiotomy. He pulled out my baby and the NICU team swooped my son away for examination. My body shook in shock as I cried. After the APGAR score confirmed that the baby was healthy, he was passed to my husband for skin-to-skin. I was told I could not hold my child until I stopped shaking. I clenched my teeth, but I continued to scream and shake for what felt like hours. The stranger called "doctor" sat at the foot of my bed as I watched the thread pull up and down, yanking nearly 50 stitches through my raw skin. I yearned to hold my baby.

Struggling With Postpartum PTSD

That loss of autonomy is one of many kinds of mistreatment in childbirth. Researchers found that in the U.S. one in six people reported experiencing mistreatment during labor or delivery. Based on The Giving Voice to Mothers survey, I was one of the 18 percent of low-income white patients in the U.S. who report a mismanaged birth. The rates among low-income patients of color are starkly higher, at about 27 percent.

In the weeks that followed, I felt stuck, voiceless, and unsure of how to make peace with what happened. Once home, I was unable to exclusively breastfeed. I bled for months. I couldn't sleep. My physical pain was enormous, as were the hauntings. I would dip further back in time to when I cared for my only brother, an infant in hospice care. He would wail from a rare disease electrifying him, damaging his brain. These traumas would replay in my mind, and I'd feel my whole body shudder.

I suffered from insomnia, nights spent staring at the ceiling as the past rewound in my mind. At my six-week check-up, I filled out a form—the obsolete Edinburgh Postnatal Depression Scale—that could possibly diagnose me with postpartum depression or anxiety. I did not feel like myself, but I didn't feel like I had either of those completely. I hoped the nurse would see something I could not vocalize.

During my visit, I was pushed through a system not meant to support me. I tried to explain to the nurse that I was experiencing feelings of reliving my birthing experience that would keep me up at night.

"You may have a slight case of depression—you can see someone or not. Up to you," she said, hand already on the doorknob. No one checked on my postpartum health again. I was never formally diagnosed. It wouldn't be until three years later, during my Ph.D. program, when I would learn from a psychology professor doing research in the field that postpartum PTSD even existed.

The Cost of a Failing System

Many people who experience traumatic childbirth and postpartum PTSD feel isolated without appropriate care and affirmation from their medical team. After an undiagnosed 17-day fever and severe postpartum bleeding left her unable to walk without intense pain in her pelvis, groin, and back, Stephanie Bernard, 36, from Atlanta, did not even get to see her OB-GYN at the typical six-week checkup.

"My husband lost his job shortly after I gave birth, which meant that we no longer had medical insurance," says Bernard, who is African American. Her doctor's office did not accept Medicaid, and it wasn't until a full year later that she learned she was suffering from diastasis recti. "Had I received the care I needed, my recovery process would have been much smoother," she says. "I had no idea about the dangers of postpartum hemorrhaging, fevers, infections, pulmonary embolisms, and heart-related issues that are common." She says she was heartbroken during those first two years when she couldn't even pick up her child and feels lucky to even be alive to share her story now.

Bernard was uninsured at the time of her postpartum appointment and did not have access to the medical care she needed. Her experience also highlights the medical bias and racism Black women experience during pregnancy, childbirth, and postpartum. "I was alarmed to learn the rate at which maternal mortality affects Black women due to not being listened to by medical professionals, staff, medical bias, and medical racism." She calls for increased education for healthcare professionals, especially non-Black healthcare professionals, on institutional racism, racial biases, especially how to identify and address both within patient care.

The national cost of perinatal mood and anxiety disorders (PMADs), such as postpartum PTSD, from pregnancy through five years postpartum registers at $14.2 billion, or an average of $32,000, for those affected but not treated. These costs break down to health consequences for mothers and children, maternal productivity loss, and increased costs for social services. For parents like me who could barely afford groceries because we lacked paid parental leave, finding, navigating, and affording such treatment felt impossible.

Research into postpartum PTSD began around 2006 and awareness has expanded since then, but the lack of patient education persists. Doctors still tend to misdiagnose PTSD symptoms as depression or anxiety.

Lyra Matin, 37, who is of Filipina descent and lives in Los Angeles, experienced a traumatic birth, which included a blood transfusion and episiotomy that developed an infection. When she tried to discuss her trauma with her OB-GYN, he misdiagnosed her. "He tried to normalize it as baby blues because of 'hormones fluctuating.' He referred me to a therapist for postpartum issues, but the therapist did not take my insurance," says Matin. She had government-funded health insurance.

The experience motivated Matin to become a psychotherapist specializing in healing trauma. After seeing the obstacles so many people face—from misdiagnoses to insurance hurdles and steep costs—she believes the entire system needs to be overhauled. "Trauma-informed care needs to be institutionalized and become required education for all medical professionals, not just mental health ones," she says.

There are regional trauma-informed care programs trying to address this, like the California-based Beba: A Center for Family Healing, which offers families early intervention and care. But national programs like these must have a larger presence during the perinatal and postnatal periods. Some families may be able to afford out-of-pocket therapy, night nurses, and postpartum doulas, but many are not in the economic position to do so. We need a system that doesn't shut out low-income patients or Black patients and patients of color. We need humans treating humans in every appointment, in every room. Those with fewer economic resources bear the brunt of our maternal health crisis; it's costing birthing people their physical health, their mental health, and their lives.

We also need improved education for our doctors and health care professionals. Just this year, the American Psychiatric Association published the first comprehensive educational textbook for understanding, diagnosing, and supporting reproductive and maternal mental health for use in medical education. At least that's a start.

The Journey Toward Healing

In the fall of 2020, I was pregnant again. This time, as a Ph.D. student, my OB-GYN visits were covered by my insurance. I also qualified for secondary coverage under my husband. During this pregnancy I became vocal in my prenatal doctor appointments. I was physically and mentally able to self-advocate, but the responsibility should not be on the birthing person. We are negotiating with a systemic problem.

Six weeks after I delivered my second child, I went to my postpartum appointment. When the Edinburgh Postnatal Depression Scale form was handed to me, I asked how diagnosis happens. The nurse told me that they only intervene if the patient is in crisis during the time of visit, but this designation is left to a clinician's own judgments. It's clear that there is no universal care directive to assist postpartum birthing parents in a tangible way.

"There has yet to be a measure created that does [appropriately test for PMADs], unfortunately," says Stephanie Freiburg, a licensed therapist certified in perinatal mental health. "Better assessment of postpartum PTSD starts with awareness and training within our healthcare system. This would mean OB-GYNs, perinatologists, lactation consultants, and nurse practitioners, would all need to take part in a training on perinatal mood and anxiety disorders."

Where To Go From Here

I'm optimistic we will see change in this country: The Build Back Better Act aims to improve pregnancy outcomes and lower postpartum complications and death by allocating $3 billion for maternal health. The plan, currently on hold due to Senate negotiations, includes funding to expand the perinatal workforce and would require states to offer continuous Medicaid coverage for a year after childbirth, closing a serious gap in care for lower-income Americans. This comes at a critical time. Our country faces an undersupply of providers and postpartum support.

To begin our journey toward change, we need to voice our concerns in health care offices. We need to call our congressperson, to speak up about better support in the postpartum period. We need to advocate for ourselves and the generations to come. If you're a patient experiencing mistreatment, find a new doctor who makes you feel heard—there are organizations that can help you advocate for your care. It's not just people who are pregnant that must do this work, but collectively, we must engage in actively pursuing better care for parents after birth. The changes will be slow, but they must begin.

This story was supported by the journalism non-profit the Economic Hardship Reporting Project.

Courtney Lund O'Neil is completing her Ph.D. in English at Oklahoma State University. Her writing has appeared in the New York Times, The Guardian, Washington Post, Harper's Bazaar, The Normal School, Chicago Tribune, and elsewhere. She is currently completing a literary memoir about motherhood, trauma, and disability and is at work on a second narrative nonfiction book on how crime narratives affect marginalized bodies and communities.