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Broken, tired and ashamed — how health care fails new moms - PBS NewsHour

Generations of women have quietly endured the messy business of giving birth. Even after reading stacks of pregnancy books, faithfully following their health care provider’s advice and successfully delivering a healthy baby, women often enter motherhood with what suddenly feels like a broken body.

They involuntarily pee when they sneeze or cough. It hurts to sit. They may feel consumed by anxiety or depression. Often, they feel too ashamed to ask for help, especially when they are laser-focused on trying to care for their brand-new baby. Many find that when they do speak up, their concerns are waved away as part of the healing process — one of the wide array of “normal” changes that happen to the body after giving birth.

The United States has some of the highest maternal mortality rates among developed countries and those statistics have worsened in recent years, particularly for women of color. Those are the worst-case scenarios of bringing a child into the world — the nightmare stories that terrify soon-to-be parents. But making it through childbirth alive doesn’t mean a parent is medically out of the woods. The health care system is often unresponsive, too fragmented or ill-prepared to handle women’s postpartum conditions, from physical pain and discomfort to psychological anguish, that can have life-long consequences. Many women surrender, thinking this is just how it goes when you have a baby.

But experts say it doesn’t have to be this way. And there’s a growing focus on the need to prioritize a mother’s care as much as the infant’s, especially during that first year after child birth.

Erin Polnaszek Boyd delivered a healthy baby girl in 2016, after a normal pregnancy. But four hours later, she suddenly became extremely dizzy, her ears rang and she felt as if she might faint. Doctors realized Boyd had hemorrhaged during labor. That was the start of her troubles. Photo courtesy of Erin Polnaszek Boyd

Erin Polnaszek Boyd delivered a healthy baby girl in 2016, after a normal pregnancy. Four hours later, Boyd, now 38, attempted to get out of bed. She suddenly became extremely dizzy, her ears rang and she felt as if she might faint.

Doctors realized Boyd had hemorrhaged during labor. She lost so much blood, she required a transfusion. Postpartum hemorrhage, though rare — occurring in around 3 percent of deliveries — is a leading cause of maternal mortality in the U.S.

After the transfusion, Boyd was fatigued, her lower back hurt, and when she went to the bathroom, she passed massive blood clots, even a week later after she had been discharged from the hospital.

Two weeks after giving birth, Boyd said her breast milk did not seem to be coming, and she developed a mild fever. She went to urgent care, where it was determined that she had retained a large part of her placenta, which the body normally ejects after the baby is delivered. Retained placenta is a leading cause of postpartum hemorrhage. The urgent care staff removed the placenta, and almost immediately, Boyd felt relief.

The experience left Boyd shaken in her faith in the maternal health care system. “Women in the United States are dying from childbirth, and we should be thinking about that,” she said.

Surviving ‘the carnage of pregnancy’

Society largely has preferred to keep postpartum problems unspoken. Women’s medical and psychological needs after having a baby historically have been often overlooked. For people who are trans or gender non-binary, having their needs addressed after giving birth can be even harder. In many cases, the health care system and society as a whole fail new parents.

The days and weeks after childbirth are most often imagined in Hallmark-card style: tired but glowing parents adoring a cherubic swaddled newborn. In 2020, Frida Mom, a company that sells postpartum products to new mothers, tried to challenge that portrayal with a more realistic depiction in a television ad slated to air during the Oscars.

The ad shows a woman recently home from the hospital. The loose skin of her stomach bears stretch marks, and she is wearing disposable mesh underwear that hospitals commonly give new mothers for incontinence and bleeding. The woman shuffles past her stirring infant to the bathroom, where she struggles to sit on the toilet. She winces as she pees and uses a spray bottle of water to clean herself — toilet paper is often abrasive and painful after vaginal delivery. ABC and the Academy Awards rejected the commercial.

“It was just a new mom, home with her baby and her new body for the first time. Yet it was rejected,” Frida Mom later said in a YouTube posting of the ad. “And we wonder why new moms feel unprepared.”

The U.S. has one of the highest maternal mortality rates among developed countries, according to data from the Organisation for Economic Cooperation and Development. There were 20 maternal deaths for every 100,000 live births in 2019, more than double the rate just two decades ago.

More than half of these women — 52 percent — died after delivery. The total numbers are likely higher than reported, as deaths from suicide and drug overdoses among people who recently gave birth may not be listed as postpartum deaths. Black women are more than twice as likely to die as a result of childbirth than white women, underscoring racial and ethnic disparities.

But there are a host of other complications that are harder to quantify, if they are reported at all.

“Evolution depends on women sucking up the carnage of pregnancy,” said Dr. Jen Gunter, a gynecologist and author of “The Vagina Bible.”

The most common complications women report after giving birth include pain after sex, incontinence, pain at the incision site following a cesarean section, and postpartum depression, Gunter said. Once the baby is born, a woman’s blood pressure may spike dangerously. She may hemorrhage or develop egg-sized blood clots. Her emotions may plummet or soar amid rapidly fluctuating hormones. Crippling lower back pain may sear on one side of the body, while on the other, the abdominal muscles separate after months of straining to contain a growing human. These changes happen while her newborn baby needs to eat once every two to three hours, if not more frequently.

Is anybody listening?

Cultural attitudes have enshrined a mythology around pregnancy and motherhood, Gunter said, and stigma has silenced conversation about women’s sexual and reproductive health. Women are told that their new baby should make them happy.

When Kathy Kim, 30, was beset with strange and debilitating symptoms after giving birth to her son in April 2020, her physical trauma was compounded by feelings of guilt and inadequacy.

The Saint Paul, Minnesota, delivery room where she delivered was chaotic with new coronavirus protocols and the hallways buzzed as doctors shifted in and out. Then, the buzz got louder. Within two hours of her son’s birth, Kim’s left ear began to ring. It felt as if she had cranked up a stereo’s volume and placed her ear next to the thumping speaker.

“I told my nurses and told my doctors,” she said. “They said, ‘There’s a lot of physiological changes after giving birth, and this is probably one of them.’”

Kim and her son were sent home a day later, presumably a pandemic measure to keep those in the hospital’s maternity ward safer. But the ringing continued and intensified when her newborn son cried. It kept her awake at night when she desperately needed to sleep in between his multiple feedings. Asking doctors and nurses for help felt like a cruel game of telephone. During an at-home visit, a nurse told Kim to talk to her son’s pediatrician, who told her to talk to her obstetrician, who told her that it was a neurological problem they couldn’t address. At one point, a doctor suggested Kim call a mental health therapist. When she did, she was told she had to wait 10 weeks for the next available appointment.

A week after delivery, Kim’s face began to droop. She feared she was having a stroke. She went to the emergency room of the same hospital complex where she had given birth, but the staff had no idea she had been there and were unable to access records from the maternity ward. An MRI revealed nothing.

When she finally saw her own records, Kim said she saw virtually no mention of the ear-ringing. Eventually, Kim learned she had developed Bell’s palsy, a temporary facial paralysis often accompanied by tinnitus, or ear ringing, that some research suggests pregnant women are three times more likely to develop than non-pregnant women. By then, it had become difficult for her to chew food because her mouth was partially paralyzed. When she managed to find time to shower, she could not close her left eye to avoid the sting of soapy water streaming down her face. She always heard the constant ringing, even as she felt no one was listening to her.

During a global pandemic, these strange symptoms, together with what felt like a dismissive response from multiple health care providers, left Kim feeling isolated and worn down, she said. She began to question her own sanity and descended into “a very dark place.”

“I felt really bad that I couldn’t be the mom I thought I was going to be,” Kim said.

A year later, Kim has recovered, although her face remains slightly asymmetrical. She still finds those early weeks “kind of tough for me to talk about.”

Fending for themselves

A person’s body takes 10 months to prepare for delivery. Then, “your body goes from pregnant to not pregnant in minutes,” said Dr. Alison Stuebe, who serves as a project investigator for the 4th Trimester Project at the University of North Carolina-Chapel Hill, which gathers and assesses research and data about how women cope with life after giving birth, what resources are available or absent and where disparities persist.

The U.S. health care system is squarely focused on the helpless newborn rather than the person who until very recently was carrying that newborn in their body, Stuebe said: “The mom is the wrapper, and the baby is the candy.”

The system provides a “really terrible response” to the needs of a new parent, Stuebe said. That response sometimes echoes a long history of women’s pain being downplayed or ignored.

Golnaz Alipour, a 41-year-old engineer from Davis, California, delivered her second child via scheduled cesarean section in 2019. Shortly thereafter, back spasms started. At one point, she could not get out of bed and needed to go to the emergency room, where no one knew what was happening or why.

After Golnaz Alipour gave birth to her second child, in 2019, she developed back and hip problems and she felt her doctors were not listening to her. She was unable to pick up her baby and even slept in her nursing chair. She still cannot stand fully upright. Photo courtesy of Golnaz Alipour

Alipour said that while she fundamentally trusted her doctors, she had to advocate for herself when they didn’t seem to be listening. At times, she said, she felt her doctor viewed her complaints as “whining,” recalling that “if I bring something up, the doctors dismiss it.” At one point, she enlisted her husband to email the doctor himself. She began to second-guess her judgment about her own health.

“If they know it is not an issue, maybe I’m getting too worried,” she said.

Often, she took her questions to a group chat with fellow mothers, where she learned of other women whose doctors were failing to address their medical concerns. The group even helped one member get herself diagnosed with kidney stones, a complication some women face after delivery.

Alipour made some progress toward identifying the cause of her back pain in early 2020, but couldn’t get the tests she needed because of the pandemic. Nearly two years after the spasms started, Alipour said she still has lower back pain and cannot stand fully upright. She wonders how she’d feel today if the doctors had listened more closely in the first place.

“Despite my reach-out to my health care provider, I was left to fend for myself,” she told PBS NewsHour.

Women should not have to feel they need to advocate for themselves, but that is often the case when health care providers fail to lead more open conversations about what is happening with women’s health and postpartum needs, Gunter said. “It really sucks to think your body is broken and nobody knows why and for there to be no treatment for your body being broken.”

Rethinking the fourth trimester

Jessica Cullen, 37, of Arlington, Virginia, had an uneventful pregnancy and an uneventful, if long, birth when she had her first daughter in 2016. After laboring for 10 hours, Cullen received an epidural to numb the pain of childbirth and pushed for three more hours. She delivered a beautiful baby girl a few minutes before midnight.

Jessica Cullen, 37, of Arlington, Virginia, had an uneventful pregnancy and delivery when she had her first daughter in 2016. But when her epidural wore off the next day, Cullen awoke to pain that seared her back and tailbone whenever she attempted to sit up or get out of bed. For months, she sought out answers, and she said hospital doctors and nurses simply shrugged at her questions. Photo courtesy of Jessica Cullen

The next morning, the epidural had worn off, and Cullen awoke to pain that seared her back and tailbone whenever she attempted to sit up or get out of bed. It hurt so badly she suppressed the urge to scream and cry. She could not pick up her baby and relied on a nurse and her husband to go to the bathroom.

Cullen’s doctors were “perplexed,” she said, and thought the pressure of her daughter’s head during delivery broke her tailbone. An x-ray showed no fracture. Before she left the hospital, doctors prescribed two opioids — Percocet and Vicodin — for pain relief and “sent me on my way,” Cullen said.

Like many new mothers, Cullen’s first postpartum appointment was scheduled six weeks after delivery. But two weeks after she left the hospital, Cullen said she struggled to bear the pain, and called her doctor hoping for answers. It would take months of Googling, searching for in-network providers and trying various treatments before Cullen would find them.

Health care providers have long viewed the six-week postpartum visit as an optional moment to check in with patients about physical recovery, lactation and contraception. And many women treat it as optional, too, or can’t find the time, energy, transportation or child care to go. But data showing worsening maternal mortality rates urged the medical community to conduct these initial visits sooner.

In 2016, the American College of Obstetricians and Gynecologists issued new recommendations to improve postpartum care, including postpartum visits scheduled three weeks after birth, along with a comprehensive postpartum visit no later than 12 weeks after delivery. And, importantly, the recommendations instruct practitioners to take the visits far more seriously, according to Dr. Haywood Brown, former president of the organization who oversaw the development of these latest recommendations.

The first three months after childbirth are sometimes referred to as the “fourth trimester.” Brown believes a parent’s health care must be prioritized during this period — and not just for three months after birth, but the entire first year.

When women hemorrhage after birth or develop preeclampsia or diabetes, he said, “they need to have proper follow-up.” Without it, things could get worse.

“The postpartum period redefines long-term health,” he said. “We want everybody to be doing fine, but we can’t assume everybody is doing fine.”

But a fragmented health care system, combined with a focus on the child over the parent and other factors mean postpartum care often falls through the cracks.

Access is a huge problem, considering half of U.S. counties have no practicing obstetrician or gynecologist, Brown said. Roughly 40 percent of women who give birth must drive 30 miles or more to the nearest delivery hospital, he said, and 50 percent of women rely on Medicaid to cover the immediate costs of childbirth and postpartum care.

During the COVID-19 pandemic, in-person wellness visits sank. While telemedicine increased access for some people, it further marginalized those who could not afford to lose the help, said Nikki Greenaway, a nurse practitioner in New Orleans who specializes in women’s health.

“COVID protocols were for people who had resources for child care, private insurance and they had stable WiFi,” she said. “It blows your mind to think about all the people that left out.”

That means a lot of women who needed care likely did not get it. That has historically been true for women of color, Stuebe said. Researchers are still collecting data from 2020 to understand to what degree the pandemic widened existing disparities in women’s postpartum health.

Over the last five years, Gunter said, conversations around postpartum complications, especially those tied to depression, have improved. Hospitals, clinics and a growing number of women’s health care providers regularly are screening for postpartum depression. Still, where one lives and where their health care system is located plays too big of a role in determining outcomes after giving birth, Gunter said.

Greenaway thinks the health care system needs to be dramatically revamped and said the coronavirus pandemic has hopefully “revealed we weren’t doing very well by parents.”

“We need to scrap that postpartum visit,” she said, and instead see new mothers at home, a practice common in other countries, such as the United Kingdom. That system would give care providers more insight about what support a new parent has (or lacks) to care for the infant. It would avoid problems that can arise with a patient’s access or ability to arrange and afford transportation or child care in order to visit a health care provider.

She also thinks insurance companies should allow providers to extend 15-minute visits by another five to 10 minutes. Together, these changes would lower the incidence of maternal mortality and long-term complications.

How doctors and patients can work together

People need to know they have a safety net of support to catch before they fall, Greenaway said. In her own practice, Greenaway works primarily with pregnant and postpartum teenagers who are homeless and follows up with them for a year after delivery, meeting them where they are, listening to their concerns and providing answers and resources when she can.

“We are not meant to mother or parent in silos,” she said.

In the last days of her maternity leave, Cullen, still in excruciating pain, found an out-of-network nurse who “knew exactly what was going on.”

Cullen mentioned that she pushed for three hours; that was a red flag for the nurse. “When I told her about everything, she said, ‘Okay. I think I know what’s going on, and I can help you.’ She said it’s common and she sees it often,” Cullen recalled.

The nurse explained that the muscles around Cullen’s core and tailbone had weakened, allowing her tailbone to move freely, causing intense pain. Many women experience tailbone pain after birth, due to ligament, muscle or posture changes, pressure from the baby, or trauma during childbirth, among other reasons. As in Cullen’s case, it often starts the first time a person sits up after delivery.

The nurse asked Cullen to perform a series of small exercises, such as lying down and lifting one leg at a time or performing stretches, “things you wouldn’t think are doing anything but ultimately they did,” Cullen said.

Erin Polnaszek Boyd got pregnant again two years later. She said her postpartum experience with hemorrhage and retained placenta and the difficulty she faced getting her medical needs met “makes me second-guess everything.”

Before she gave birth to her second child, Boyd said she peppered her health care providers with questions. She asked what their protocols were if a woman were to hemorrhage and asked if they had a kit available with supplies to control bleeding in case she did again. She also knows her story could have ended much more tragically and often does for women in marginalized communities. She feels those negative stories about life after childbirth are too often forgotten and that “women feel they must suffer among themselves.”

Women should not wait to ask questions, Greenaway said. She advises her patients to write a list of questions ahead of their first prenatal visit, such as whether the hospital practices delayed cord clamping or skin-to-skin contact immediately after birth. She also said she wants clients to never fear challenging a health care provider’s initial recommendations or to leave someone who is not delivering appropriate care. Patients repeatedly tell Greenaway that they felt ignored. That tells her that “providers need to pause,” look up from their checklists and provide individualized care based on that patient’s experience, Greenaway said.

“The patient is an expert on their body. The doctor is an expert on the body,” she said. “They have to work together.”

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