Charting postpartum depression

WHENEVER SHE PICKED UP a knife, Jamie Zahlaway Belsito thought about stabbing herself. The thought intruded so often that the mother-to-be thought it was a sign that having a baby was a mistake.

The dark-haired, vivacious former Philips executive used to jet back and forth between Boston and the technology company’s headquarters in the Netherlands. Belsito had been a Washington lobbyist working on business immigration reform, and an accomplished flamenco dancer.

But late in her pregnancy five years ago, Belsito got laid off. At age 35, she was at risk for complications and had already had one miscarriage. She began avoiding touching anything sharp. It was “just horrific to even have something that was so absurd go through your brain,” Belsito says.

She had complications during labor and ended up delivering her daughter, Hadia, by emergency caesarian section. Soon after she got home with Hadia, her husband left on one of his regular business trips. Belsito did not know it at the time, but Hadia had dairy and soy allergies. The infant cried, threw up all over, and did not sleep well. Belsito cried all the time, too. She sought help from her doctor, but antidepressants did not help. “I just wanted to go to sleep and never wake up,” she says of those dark times in her Beverly home.

With growing recognition of the risks of untreated depression on women and their children, some Bay State lawmakers, health care providers, and insurers believe that Massachusetts needs to reorient the way the health care system handles the emotional complications of pregnancy and childbirth. Postpartum depression is one of the most common complications of pregnancy and the postpartum period. What’s more, the condition can be detected using a simple questionnaire, and many women respond well to treatment. “This is so minor—to use a screening tool,” says Rep. Ellen Story, who co-chairs the state’s Special Legislative Commission on Postpartum Depression.

But universal screening is proving to be a hard sell. Story, an Amherst Democrat, has filed several postpartum depression screening bills over the past six years, including one to mandate statewide screening for all women and one to mandate screening for MassHealth patients. The proposals have gone nowhere. No one is vehemently opposed to screening, but the issue hasn’t gained enough traction to make it a priority on Beacon Hill.

Understanding postpartum depression

In the weeks after her daughter’s birth, Belsito knew something was seriously wrong. The thoughts about knives had stopped, but she did not feel any better. She eventually located a postpartum depression Meetup group at Beverly Hospital, and decided to go. No one else did. Social workers there gave her a list of phone numbers to call. “That was it,” she says.

After making a couple of calls, Belsito found a therapist and went with Haida to see her once a week. She started dancing again and her life gradually returned to normal. But when she became pregnant again, the thoughts about knives returned. She had another emergency caesarian and a second little girl who had trouble sleeping without her. On a summer day walking along the Merrimack in Newburyport with her family, an ugly thought popped into her head: What if she threw the baby into the water?

Belsito knew she needed help fast. A therapist told Belsito she could see her in six to eight weeks. Belsito told her doctor that she might not make it that long. Instead, Belsito, who had moved to Topsfield, tracked down her old therapist who agreed to see the entire family. The social worker told Belsito’s husband, “What she is dealing with is totally real.”

Postpartum depression is a global term that encompasses the three types of emotional complications that a woman might experience after delivery: baby blues, postpartum depression, and postpartum psychosis. Roughly 8 to 20 percent of all women suffer from postpartum depression following a child’s birth. Health care professionals also use the term perinatal depression to describe the condition and the period when it occurs, anytime during pregnancy through the first year after childbirth.

There were nearly 72,000 births to Massachusetts mothers in 2013. At the urging of the state commission, the Department of Public Health set up a screening pilot program in 2014 that targeted more than 2,000 pregnant and postpartum, mostly low-income, patients at four community health centers in Holyoke, Lynn, Jamaica Plain, and Worcester.  The pilot program found that, overall, about 12 percent of women who were screened had depression symptoms ranging from mild to severe.

The program evaluated 1,059 postpartum women: 839 (79 percent) of them received a postpartum depression questionnaire. Of the women who agreed to take the survey, 50 women (6 percent) had symptoms that indicated mild depression. Another 48 women (6 percent) had moderate to severe depression symptoms. The Patrick administration axed the $200,000 program during last year’s budget cuts.

The hormonal shifts that take place after delivery can affect some women more than others. According to Massachusetts General Hospital’s Center for Women’s Mental Health, many women experience what is commonly known as “baby blues.” Women cry, or get anxious or testy after giving birth. Those symptoms usually disappear after about two weeks and a woman is able to take care of herself and her baby.

New mothers may experience sadness, problems with sleeping or eating, an inability to focus, and thoughts of suicide or hurting their baby. The stress of poverty is also a risk factor for postpartum depression: the rates are more than double for low-income women. Other social factors can also make a woman more prone to the condition, including marital problems, being isolated at home, having anxiety about returning to work, and depression before pregnancy.

Sen. Joan Lovely, a member of the state commission, suspects that she had postpartum depression after the birth of her first child nearly 30 years ago. “I had an anxiety condition before I had children,” says the Salem Democrat, a mother of three 20-something daughters. “After I had my first daughter, I became agoraphobic and could not leave my house for a whole year.” Because she was nursing her daughter, Lovely resisted medication and, instead, had to undergo intensive therapy.

Postpartum depression often goes undetected. Left untreated, depression can lead to complications, including pre-eclampsia (high blood pressure during pregnancy), premature birth, and low birth-weight babies. After the first year, a mother’s depression can lead to her children having anxieties or being prone to disruptive behavior, according to Dr. Nancy Byatt, a psychiatrist who is the medical director for the Massachusetts Child Psychiatry Access Project for Moms. “If a child has mental health or behavior concerns, they don’t usually go away when [that person] becomes a preteen,” says Byatt.

At the opposite end of the spectrum of emotional complications is postpartum psychosis, the most serious type of mental disorder that can occur after childbirth. Women suffering from postpartum psychosis behave erratically and have delusions and hallucinations. The condition affects a small minority, about one-tenth of 1 percent, of women.

Postpartum psychosis usually ends up in the headlines when a woman commits suicide after the birth of a child or kills one or more of her children. Andrea Yates, the Texas woman who drowned her five children in 2001, suffered from psychosis. According to news reports, Miriam Carey, the Connecticut mother killed by police in 2013 after a car chase in Washington, DC, had depression with psychosis. Carey believed that President Obama had her under surveillance. Her baby, who was in a car seat during the shooting, survived unharmed.

Underlying medical issues, such as thyroid problems, can trigger postpartum psychosis. Shauna Kellar, an elementary school teacher turned stay-at-home mom, experienced periods of psychosis after the birth of her older daughter in 2006. Her first postpartum experience was horrific, complete with a stay in Berkshire Medical Center’s psychiatric unit, “on enough meds to tranquilize a horse,” she says. Nearly two years later, the Richmond woman says she was “100 percent better.”

But Kellar nearly died as a result of a second bout of postpartum emotional complications after the birth of her son three years later. She had abnormal thyroid levels again. Her doctors’ inability to calibrate her thyroid and psychiatric medications caused major complications. During one psychotic episode, Kellar called her mother to tell her that she planned to baptize her son in the bathtub because Jesus was coming to save the world.

After multiple hospitalizations, two suicide attempts, and electroconvulsive therapy in a Saratoga, New York, mental health treatment center, she came under the care of a Boston-area psychiatrist who tried to have her committed to St. Elizabeth’s Medical Center in Boston. After a judge intervened and ordered him to find a better solution, her meds got tweaked, her thyroid returned to normal, and she recovered two weeks later.

Today Kellar is back to teaching and is writing a memoir. She plans to visit Disney World with her husband and kids. “Postpartum depression is different in each person,” she says. “There is no standard treatment plan for each mom.”

Most women do not want to admit that they have a problem because they fear being compared to women like Yates or Carey. They worry that being treated for mental illness means that their children might be taken away from them. “Society is going to judge what they don’t even know,” says Belsito, now a volunteer with the North Shore Postpartum Depression Task Force.

Belsito says that’s why it’s important to remove the stigma surrounding postpartum depression, and to explain that it is very common and that most cases are mild to moderate and respond well to treatment. “If the absolute, extreme heartbreak situations of women who have hurt their children or have hurt themselves ends up being what postpartum depression is, no mom will ever talk about it because who wants to associate themselves with that?” she asks.

The stigma surrounding mental illness and postpartum depression can be a powerful deterrent to getting treatment. Motherhood is supposed to be one of the most idyllic periods of a woman’s life. The reality is that the first year after childbirth is physically taxing and emotionally draining. Images in the media of slim, stylish mothers cradling clean, happy babies don’t jibe with the daily grind of vomit-stained clothes, dirty diapers, and cranky infants that only sleep a few hours at a time. The novelty of a raising a newborn quickly wears off as family and friends return to their own busy lives, often miles away.

“We have just perpetuated the myth that pregnancy is a glowing time for all women and that having a baby is the most glorious life experience ever,” says Deborah Issokson, a  psychologist in Wellesley and Pembroke who specializes in perinatal mental health. “It isn’t as simple as you have your baby, you go home, and all the ladies in the neighborhood gather with their babies in their buggies and have coffee together. That’s not how people live anymore.”

Looking for signs

The aim of screening is to identify at-risk women and help reduce stigma around postpartum depression by handling it as a routine feature of a woman’s medical visit, much like testing for hypertension and gestational diabetes. The Edinburgh Postnatal Depression Scale is one type of questionnaire used by health care providers to identify women who may be at-risk for postpartum depression. The survey consists of 10 questions that help judge a woman’s mood: whether she has bouts of crying, has trouble sleeping, or is thinking about harming herself. A score of 10 or higher indicates that a woman might be suffering from depression.

Treatment for postpartum depression includes talk therapy, one-on-one or in a support group, and antidepressants (although some breastfeeding mothers prefer not to take them). “If you can get a mom or an expectant mom the help that she needs early in the pregnancy, then potentially you can prevent postpartum depression,” says Byatt.

Only a handful of states, including Illinois, New Jersey, and West Virginia, screen all mothers for postpartum depression. Illinois legislators mandated screening more than a decade ago after a woman suffering from postpartum depression committed suicide. Illinois law requires health care providers to screen women, but under state regulations a provider merely has to invite pregnant patients to complete a questionnaire; the woman is not required to complete it. Illinois reimburses doctors for screening of both Medicaid and private patients.

Some doctors have been reluctant to screen women in part because they do not have mental health training and aren’t sure what the next treatment steps ought to be. There’s a fear, too, that a woman might fall through the cracks if a provider fails to keep tabs on her. “There needs to be a system in place,” says Byatt. “Doing the screen itself isn’t going to change her outcome; it needs to be followed up.”

To help Bay State health care providers determine what to do about a woman who might be depressed, the Department of Mental Health launched the Massachusetts Child Psychiatry Access Project for Moms (MCPAP for Moms) in 2014. MCPAP for Moms provides statewide consultations for obstetricians, pediatricians, nurses, midwives, and others who work with pregnant women and new mothers. The telephone resource and referral service relies on hubs at Brigham and Women’s Hospital in Boston, UMass Memorial Medical Center in Worcester, and Baystate Medical Center in Springfield.

Psychiatrists and care coordinators offer doctors real-time consultation on issues such as drug safety and provide information about trainings, support groups, and other local resources. In the first six months of operation, the program handled more than 500 calls and assisted more than 300 hundred women. The cost of the program for fiscal 2016 is $600,000.

Nationwide, the American College of Obstetricians and Gynecologists is not on board with mandated screening. The group has advised its members that “there is insufficient evidence to support a firm recommendation for universal or postpartum screening.” That view is unlikely to shift until more states have ways to connect doctors with treatment options and more evidence that screening is effective.

Dr. Tiffany Moore Simas, an obstetrician/gynecologist who teaches at the University of Massachusetts Medical School, describes doctors’ reservations this way: “What everybody has been up in arms about is: We screen, we identify depression, and then what?” says Moore Simas, who is a member of the state postpartum commission. “Is it enough to give a woman the name and a number for a place to go? Is she going to actually engage in treatment?”

Also complicating the issue is the fact that for many postpartum women, their main interaction with the health care system is through their child’s pediatrician. Pediatricians have been reluctant to screen women because the child, not the mother, is their patient.

Some Bay State pediatricians want to shift more attention to mothers because a parent’s depression can have an impact on the child. “You can screen for development problems, but can you screen for predicting mental health disorders long-term or behavioral health disorders in [young infants]?” says Dr. Michael Yogman, a pediatrician who sits on the state commission. “The answer was clearly screening mothers for postpartum depression because maternal depression affects the mother and child interaction.”

Insurers are lukewarm on screening. The Massachusetts Association of Health Plans, which has a seat on the state commission, has yet to take a position. Elizabeth Murphy, the association’s public policy and regulatory affairs manager, says that while screening makes sense, the decision to screen is best left up to individual providers. “With some women, there is some sensitivity around this,” Murphy says. “There is also a fear by some providers that if a woman is suffering from postpartum depression…that she may be less likely to go to a doctor’s visit because she doesn’t want the doctor to see that.”

Reimbursement for screening is also an issue. “I have been arguing for the better part of seven or eight years that the refusal of Medicaid to pay for postpartum depression screening was just harmful,” Yogman, the pediatrician, says. “Pediatricians are asked to do so many things, and if the insurers don’t value [screening] to reimburse for it, even minimally, they are just not going to do it. There are too many other things to do.”

Behind the screen

Story has not gotten much traction on a statewide screening program, but she believes that screening is key. “Because it is prevention, it saves money,” she says. “If you can get somebody in a group talking about the terrible thoughts that she is having and get her to understand that she is not the worst mother in the world, then you may save her from a psychiatric hospital.”Story spearheaded the effort to set up a statewide postpartum commission in 2010. The group, composed of more than 30 lawmakers, public health officials, doctors, and advocates, examines research and works to raise awareness. The first two screening bills that Story introduced did not advance. In January, Story re-introduced a bill that would mandate screening for MassHealth patients and restore funding to the pilot screening program.

There is no statewide data currently available on who screens for postpartum depression and who does not. Under a compromise plan after universal screening failed, state public health officials agreed to collect data annually on available screening programs. Health care providers must report their findings to the department early next year. To overcome the obstacles involved in tracking information through electronic records, which had dampened the interest in screening among some providers, state health care officials devised a special tracking code for them to use to submit data to the department.

While state health care officials continue to mull the cost of MassHealth screening, the Joint Committee on Health Care Finance put the statewide price tag at an estimated $101,000.

The Baker administration has adopted a wait-and-see approach. “MassHealth does cover many types of wellness screenings and views postpartum depression as an important issue,” said Rhonda Mann, the Executive Office of Health and Human Services communications director, in a statement. “We do plan on taking a serious look at any evidence-based screening that has the support of the public health community.”

“The money piece of this always gets in the way,” says Lovely. “We are talking about the health of the mother and the health of her child. Doesn’t that trump anything else? If a mom is struggling,who knows if the symptoms of postpartum depression could go from mild to severe?”

Photographs by Meghan Moore

CORRECTION: An earlier version of this article misidentified Deborah Issokson. She is a licensed psychologist (not a psychiatrist) in Wellesley and Pembroke (not Belmont).