Stigma Hinders Treatment For Postpartum Depression

Aug 1, 2011
Originally published on August 1, 2011 6:30 pm

When Heidi Koss picks up her daughter Bronwen from middle school in a Seattle suburb, it's completely routine: They chat about kickball and whether Bronwen ate the muffin her mother packed for a snack.

But 10 years ago when Bronwen was born, things were anything but ordinary, says Koss.

"I felt nothing toward my baby," says Koss. "One day I woke up and I didn't care about her."

Koss was going through postpartum depression, or PPD, thought to be caused by a combination of stress, genetics and hormonal changes. It was her second time; she'd also had it after the birth of her first daughter, Elora. Surveys show that 1 in 7 new mothers in the U.S. have a prolonged period of overwhelming depression or anxiety after giving birth.

PPD is different from the "baby blues," a term for the temporary sadness that can hit women right after birth for a few days or a few weeks. PPD lasts for months and bears a special stigma that makes it more difficult for mothers to get care, not just in the U.S. but in other parts of the world as well.

Symptoms can include changes in sleep or weight or activity levels, intense anxiety and a lack of interest in life. One study shows that half of women with PPD have obsessions, like thoughts of hurting their babies.

On The Brink Of Suicide

Koss had those violent thoughts, and they drove her to attempt suicide. Her husband pulled her back from a third-floor window ledge. She held a knife to her wrist. And at one point, she lined up a lethal dose of pills.

The only thing that that kept her from suicide was her conviction that no one would love her baby as much as she did, and no one would take care of her as well.

Her profound unhappiness was hard for her to admit at the time. "I felt like admitting that I was struggling meant I was a bad mother, so I kind of put on my best face and best foot forward and soldiered on," she says.

She eventually went to her obstetrician, but he said there was nothing much he could do. Then Koss found a support group, now known as Postpartum Support International, 17 months after Elora was born. After Bronwen was born, Koss got treatment, and while she still suffered symptoms, she says that with the help of the support group, she didn't feel so alone.

Katherine Wisner, a professor of psychiatry at the University of Pittsburgh who's been studying postpartum depression since 1985, says it's hard to get doctors interested in PPD. She says many are not trained for it, and insurance companies often don't reimburse for it.

But, she says, treatment, which consists of counseling or antidepressants, can help about half the time, and acknowledging the disease can at least ease the social strain.

Mothers from all socioeconomic groups are affected. In a recent survey of 10,000 women who had given birth at a University of Pittsburgh hospital, Wisner and her colleagues found that 14 percent across all economic classes showed symptoms that met the criteria for PPD.

PPD In Uganda

And PPD occurs outside the U.S., too. Take, for example, Uganda, a country whose government has made access to mental health care a new priority.

In a 1983 paper in the journal Social Psychiatry, Scottish psychiatrist John Cox looked at 18 women in Uganda with PPD. He reported that the women were unlikely to seek medical care for their condition, and that their symptoms were similar to those in Scottish women, except for one thing: The Ugandan women felt less guilty about their PPD.

One reason may be that many were never aware of exactly what they had. Psychiatrist Florence Baingana — one of about 30 psychiatrists in Uganda — says there isn't much awareness about PPD as a mental illness. "If it isn't recognized as a mental disorder, the stigma may not be attached to it," she says. The downside is that many cases are likely to go undiagnosed and untreated. The upside is that women are more willing to be treated.

That's what happened with 30-year-old Dorothy Mwesiga, who lives in a small village. Mwesiga had symptoms of PPD after all three of her babies were born.

Sometimes she would just sit, unable to do anything other than feel anxious. She says she felt like she was losing her mind and was terrified someone would take her babies away. "After the first time, I was frightened," she said. "But I thought it would be the end of it."

Mwesiga got help from a local nurse, Emmanuel Musumba, who like most other health officers across Uganda, has gotten some psychiatric training from the government. He treated her with antidepressant drugs and talk therapy, and she got better. But Mwesiga was never told she had PPD; instead Musumba told her she had "the worries."

Treating 'The Worries'

Her husband, a driver for the pastor of the local church, has been enormously supportive, she says, and so have her relatives and neighbors. But Musumba says that wouldn't be the case if they thought she had a mental illness.

"In Africa," he says, "depression is not easy to explain. I told her I was treating the worries, and that all would be well if she took the medication."

Mwesiga's only worry now is that she will run out of free medication provided by the government before her depression ends. It happens often, he says.

Koss, the American woman with PPD, went on to get a master's degree and a license as a mental health practitioner. She counsels women about PPD and is active with the support group Postpartum Support International.

She thinks the stigma against PPD in the U.S. is lessening in part because celebrities such as Brooke Shields have gone public about their own PPD. "I now feel comfortable talking about it," Koss says. "There's not as much shame."

Reporter Joanne Silberner traveled to Uganda as part of a Rosalynn Carter Fellowship for Mental Health Journalism.

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MICHELE NORRIS, host: Today in our series "Beginnings," we look at a problem that often goes unrecognized or ignored after women give birth. Surveys show that one in seven new mothers in the U.S. goes through a prolonged period of overwhelming depression or anxiety. It's not just a phenomenon of Western societies. Postpartum depression occurs in the developing world, too.

Joanne Silberner reports on how two women - one in the U.S., and one in Uganda - dealt with their depression, and how the stigma can keep women from seeking proper treatment.

JOANNE SILBERNER: Heidi Koss is in her kitchen just outside Seattle, making banana bread.


SILBERNER: Her 10-year-old daughter, Bronwen, is working on a crafts project. Sixteen-year-old Elora is watching TV. It's getting on 6 p.m.

HEIDI KOSS: So Elora, what are you feeling like for dinner? We've got leftover duck.

SILBERNER: After Elora was born, Koss got hit hard by postpartum depression.

KOSS: I would say about two weeks into it, I started feeling the blues at first. And then I started crying a lot every day, feeling more and more depressed, having a harder time getting out of bed.

SILBERNER: Koss was intensely anxious about her baby. She worried obsessively that she might hurt her. She had terrible nightmares. One time, her husband had to stop her from jumping out a third-floor window. Things were no better when Bronwen was born.

KOSS: With my second daughter, when my symptoms kicked in, I felt nothing towards my baby. It was as if one day, I woke up and I didn't care about her. I would look at her, and I felt no feelings of bonding or attachment. I didn't care.

SILBERNER: This is the tragedy of postpartum depression. It isn't the way things are supposed to be. Women may have persistent sleep disturbances, a lack of interest in the world, dramatic changes in weight and extreme anxiety. Symptoms vary in severity. Koss' were severe.

KOSS: I would envision hurting her when she was crying inconsolably, and there was pretty much nothing I could do if I tried everything to soothe her. I would visualize smothering her with a pillow. I would visualize smacking her head against the wall until she was unconscious and couldn't make a noise - horrible thoughts that I was terrified by, and horribly ashamed of.

SILBERNER: It was clear to Koss that this was not what people call the baby blues. Those come on a few days after birth and are gone by day 10. Postpartum depression is different. It appears within a month of birth and remains for months before lifting. No one knows exactly what causes it. Researchers suspect some combination of hormones, stress and genetics.

Psychiatrist Katherine Wisner, of the University of Pittsburgh, says it damages not only the mother but the baby, too.

Dr. KATHERINE WISNER: The mother's much less able to pick up the baby's cues, respond to the baby, comfort the baby because she's having a lot of difficulty comforting herself.

SILBERNER: Several studies have shown that children of mothers who had postpartum depression are more prone to behavior problems and are less successful in school, especially if the mothers go for a long time without treatment. Wisner says it's not unusual for postpartum depression to go unrecognized and untreated because the pressures on women to be normal can be great.

WISNER: This beautiful baby is in the arms of a smiling mother who's just delighted - that's what we as a society want to see. So to walk into your obstetrician's office and break down crying, or say you don't feel the way that society expects you to, is a real burden.

SILBERNER: These societal pressures are not just a factor in the U.S. Postpartum depression happens everywhere, even though some Westerners dismiss depression as a luxury of rich societies.

DOROTHY MWESIGA: (Foreign language spoken)

SILBERNER: Here in a rural village in Uganda, down a bumpy, red-clay road miles from the highway, 30-year-old Dorothy Mwesiga had postpartum depression after the birth of each of her three babies.

MWESIGA: (Through Translator) But every time I give birth, I get it. And this is the third time I'm getting it.

SILBERNER: She would get overwhelmed with anxiety - not wanting to let anyone touch her baby, not wanting to sleep because someone might take her baby. She had the same diagnosis as Heidi Koss in Seattle, but because of the stigma a label like depression carries in Mwesiga's small village, it's called something else: the worries. Her health officer, Emmanuel Musumba, explains.

EMMANUEL MUSUMBA: In Africa, depression is - it's not easy to explain to someone that you have a disease called depression, as it is in America. I told her we are treating the worries, and trying to reassure her that all will be well when she takes this medication.

SILBERNER: He says if he told her she had depression, she might be shunned by people in her community, the same people who helped her take care of her babies when she was sick.

MWESIGA: (Through Translator) Now, I say that I love my baby, and I look after her - after the baby. But when I get sick, I don't want other people to touch my baby. I think they're going to take away my baby.

SILBERNER: She credits her community, her religious faith, and the counseling and antidepressants from the health officer for getting her through. Katherine Wisner says postpartum depression can be treated successfully about half the time with medication or counseling. It's getting the diagnosis in the first place that's the problem. Women are sometimes too embarrassed to admit they're depressed, and the health-care system isn't always set up to recognize it.

WISNER: And there are some physicians who tell me that they don't see postpartum depression in their practices. And my guess is, that's right. They don't see it.

SILBERNER: That's because they're not looking, she says, and they feel out of their league treating it. And getting reimbursed for it is complicated. Koss says that when she complained to her obstetrician after her first daughter was born, he said there wasn't much he could do for her.

KOSS: I am angry that my OB didn't know better information to give me, that I couldn't have received early intervention, that I suffered that long, that my daughter was exposed for so long to a mom that wasn't well.

SILBERNER: Her older daughter is being treated for depression. For Heidi Koss, who now has a loving relationship with both daughters, the whole experience has left lasting wounds.

KOSS: I was very sad. I think I'm still sad. I still feel guilty that as a mom, I didn't feel love for my baby.

SILBERNER: The grief, the pain and the guilt broke up her marriage, she says. But one good thing came of it all: Koss' anger sent her back to school. She's now got a master's degree in family therapy. And she's counseling women with postpartum depression, so they'll have an easier time of it than she did. For NPR News, I'm Joanne Silberner. Transcript provided by NPR, Copyright NPR.