For five years, Clare Dolman took lithium to manage her bipolar disorder. The medicine kept her happy and well with few side effects, and she described it as a wonder drug. But when she began to plan for a pregnancy, her psychiatrist advised her to go off the medication to protect the fetus. This was 1988, and it was the standard guidance at the time.
While Dolman experienced some stresses during the pregnancy, her mood remained stable. But soon after giving birth, she began to experience mild hallucinations.
“I thought, yes, there’s something wrong here,” she recalled. “But I had the insight still to see that I was getting ill, and my husband knew I was getting ill because he had seen me really bad.” She went on to spend five weeks in the hospital.
Bipolar disorder involves extreme fluctuations in mood and is classified into different types according to symptoms and severity. For women with the condition, pregnancy can be a fraught endeavor as they balance the health of their growing fetus with their own mental state. Many, like Dolman, stop taking the medications that keep them well — which can lead to a recurrence of symptoms — and some avoid pregnancy altogether.
Dolman went on to do a doctorate on the experiences of women with bipolar in pregnancy and became a mental health advocate. In the decades since her pregnancy, the field of bipolar research and recommendations for treatment of pregnant and breastfeeding women have evolved, but experts say the information has not percolated through to all clinicians. (Some major medical groups have guidelines on psychiatric medication use during pregnancy while others, like the American Psychiatric Association, do not.)
And questions on safety remain. All medications pass the placenta, and many will reach the brain of the fetus, said Veerle Bergink, director of Mount Sinai’s Women’s Mental Health Center in New York. “Have we made progress? Yes,” Bergink said. But, she added, more still needs to be done to make the decision-making process easier for patients.
“I think it’s partly due to the stigma around mental health. And it’s partly due to what we expect of parents and women in our society.”
The ideal approach for a woman wanting to start a family, experts say, is that she consult with her psychiatrist before trying to conceive. But treatment may be more complicated if a woman does not realize she is pregnant right away, requiring her to make decisions quickly.
Several psychiatrists told Undark that it is dangerous for women to come off medicines abruptly because it puts their mental health at risk. But a lot of women choose to stop taking their medication, said Tania Gergel, an honorary senior research fellow at University College London’s department of psychiatry and director of research for the charity Bipolar U.K., because of what she described as a golden notion of natural childbirth — a desire to put the child’s needs first — and caution about medicines’ potential impact.
Providers can get pulled into this dynamic too, even though pregnancy is known to be a time of increased risk to mental health, said Nancy Byatt, a perinatal psychiatrist and a professor at UMass Chan Medical School. “I think it’s partly due to the stigma around mental health. And it’s partly due to what we expect of parents and women in our society where we think, ‘They’re going to ignore their needs, and they’re going to take care of their baby.’”
Bipolar disorderaffects between 2 and 3 percent of the U.S. adult population, including about 4 million women. While there are several types of the disorder — the most common being bipolar I disorder, characterized by manic episodes, and bipolar II, which involves hypomania and a greater tendency towards depression — most patients are prescribed mood stabilizers or antipsychotics. (In severe cases, patients may undergo electroconvulsive therapy.)
For years, little was known about how these drugs affected fetal development. Medicines are rarely tested on pregnant individuals because of worries about harming the fetus. But recent studies reviewing the outcomes of births in Scandinavian national registries have dispelled some concerns. One study of children born in Denmark between 2008 and 2017, for example, showed that, after adjusting for confounding factors, antipsychotics during the first trimester did not increase the risk of congenital malformations. And brain imaging has shown that school-age children exposed to lithium in utero had no statistically significant differences from those who were not.
Still, the data are far from conclusive, and many clinicians see this field as particularly complex. “We can only ever be tentative in this area,” David Baldwin, a professor of psychiatry from the University of Southampton, told a meeting of psychiatrists in Edinburgh this summer. “The evidence is changing over time.”
For example, the medication Dolman was taking, lithium, had been linked with heart defects in 1974, but subsequent analyses added nuance: High doses during the first trimester increase the risk of heart malformations, but a low dose does not, and after the first trimester lithium is relatively safe, said Bergink, the corresponding author on a review of lithium in 2018.
And the evidence for safety on other bipolar drugs can be mixed. Take lamotrigine, for instance: In the early 2000s, animal trials indicated that it could increase conditions like cleft palate, but later studies found no such link, reassuring clinicians. More recently, though, a meta-analysis pointed to potential risks to cognitive development in babies whose mothers took the drug in pregnancy. This is “something we should look at and be concerned about,” said Baldwin.
“We can only ever be tentative in this area.”
Other drugs long suspected to be dangerous have had their toxicity definitively proven, yet surveys show they are still occasionally prescribed to women even during pregnancy. One version of valproate, marketed as Divalproex, is the second most common mood stabilizer used after diagnosis in the U.S. Valproate is often preferred to lithium because it’s safer for kidneys. Studies have found that 11 percent of children exposed to the drug in utero can develop congenital disorders, and up to 40 percent develop cognitive and behavioral disorders — outcomes that have led the British Medicines and Healthcare products Regulatory Agency to advise physicians against prescribing the drug to all new patients under the age of 55, regardless of whether or not they’re likely to become pregnant.
But in the U.S., prescription of sodium valproate to women of childbearing age remains relatively common, according to Almut Winterstein, a pharmacoepidemiologist at the University of Florida, who also advises the Food and Drug Administration and has chaired its Drug Safety and Risk Management Advisory Committee. A study she published with colleagues in May 2024 found that between 2005 and 2020, almost 70,000 women in the U.S. were prescribed the drug, with the most common prescriptions being for mood disorders. About 1 percent of the women became pregnant. Drug labels do not have a visual warning that would clearly alert pregnant women not to take the drug. “Obviously, my stance is there needs to be something done about this,” Winterstein told Undark.
Part of the problem is that programs set up by the FDA to highlight the risks and restrict the use of medications do not apply retrospectively to older medicines like sodium valproate, said Winterstein, who is developing a tool to assist the agency’s decision-making.
Meanwhile, some other mood stabilizers may interact with oral contraceptives and make them less effective. For example, Winterstein’s research found that the risk of conception in women on carbamazepine, which can cause birth defects, rises by 40 percent compared with other drugs that do not affect levels of contraceptives in the body.
Patients on such drugs should use an implant or IUD for contraception, Winterstein said, while sodium valproate should be dispensed only to women who can show a negative pregnancy test. “There needs to be more education, and it needs to be more explicit,” she said, citing the risk of cognitive defects. “That is huge, in my opinion, because it has such an incredible profound impact on a mother’s life forever, potentially.”
Devika Bhushan was working in public health when she decided to have a child three years ago. The pediatrician, who was 35 at the time, had been taking lithium and Seroquel since her first bipolar episode when she was 23, and had been with her partner for almost two decades. “It was very much a wanted pregnancy,” she said. Because she was stable, her psychiatrist advised her to continue taking her medication but decrease the dosages.
Bhushan’s pregnancy went smoothly, and her daughter is now 2 years old. Still, her experience wasn’t without its challenges: Bhushan said some medical practitioners seemed to view her with mistrust, even though she was a trained physician. And research suggests this may be a common experience: Dolman’s work has highlighted the stigma women encounter in their interactions with health care providers.
Now an advocate for equity in health care, Bhushan said that knowledge gaps persist, and that primary physicians may give women outdated advice. In the U.S., where the number of perinatal psychiatrists is limited, she said, “many people don’t have any access to perinatal expertise.”
To Byatt, maternal mental health is not a gap but a crevasse. A 2023 report conducted by the Policy Center for Maternal Mental Health found that 70 percent of U.S. counties lacked enough qualified mental health providers and psychiatrists to care for pregnant people and new mothers.
Byatt has attempted to address this chasm through setting up the Lifeline for Moms program and the Massachusetts Child Psychiatry Access Program for Moms, which has been rolled out across 30 states and assists patients, psychiatrists, and obstetricians alike. But overall, access to perinatal psychiatric care can be painfully slow, and for those with public insurance can take several months, Byatt said.
Meanwhile, perinatal care is not required in psychiatric training, and some psychiatrists still decline to treat pregnant women entirely, Byatt said. Obstetricians can end up facing psychiatrically complex patients, with no idea what to do. And social stigma may lead women and their clinicians to downplay mental health concerns, even though mental health and substance-use disorders are the leading cause of maternal deaths in the U.S.
“I think people get really pulled into thinking about the risks to the baby of the medication. And they don’t think, ‘Well, [what] if the mom dies from suicide, or you know, infanticide happens because of postpartum psychosis,” Byatt added. “Not treating is not risk free.”
The choice whether to stay on medication during pregnancy remains highly personal, and it’s “definitely the most difficult decision we ask patients to make — thinking about pregnancy whether to stay on, to stop, to switch” their medications, said Ian Jones, a professor of psychiatry and clinical neurosciences at Cardiff University.
Women should not assume that their medications are unsafe in pregnancy, said Shari Lusskin, a clinical professor of psychiatry, obstetrics, gynecology, and reproductive science at the Icahn School of Medicine at Mount Sinai. “It is better to prevent relapse than treat relapse,” she said.
Still, in forums and discussion threads, women speak of choosing not to have children, concerned about managing their mental health along with a baby’s well-being. But Paola Dazzan, a professor of the neurobiology of psychosis at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, said her service has supported many women with bipolar disorder through the perinatal period, sometimes over the course of several pregnancies.
“Having the disorder in itself is definitely not a reason to avoid considering a pregnancy.”
“Anybody who has bipolar disorder and is worried and thinking about having a baby, talk to someone with experience in perinatal mental health,” she said. “Having the disorder in itself is definitely not a reason to avoid considering a pregnancy.”
Gergel has developed an advanced choice document, allowing pregnant people to express their wishes ahead of a manic or depressive episode. The idea, she explained, is that “even if they became so severely unwell that they had lost the capacity to consent to treatment, that their voice could still be heard, that their voice was still part of the decision-making process.”
Alessandra Torresani, a 37-year-old actress who lives with bipolar and is an ambassador for the National Alliance on Mental Illness, took a similar approach: After talking with her psychiatrist, she decided to come off lamotrigine during her pregnancy, since she felt the research about the drug’s long-term impact was not sufficiently clear. Before becoming pregnant, she spent six months tapering her meds, and told her family that if she had a relapse, she was willing to start taking the medication again. As it happened, she did relapse in her second trimester for a few weeks, but the symptoms resolved quickly on their own. She advises women in this position to talk to their doctors and do what works for them.
“I felt I had a very safe space, a safe group around me to watch me and protect me and monitor me, where I could make that decision,” she said. “That decision is not for everyone.”
Dolman had a second child less than two years after her first, and stayed off lithium again during that pregnancy, although she went back on the drug as soon as he was born and chose not to breastfeed. She was determined she would not have another postnatal relapse.
That was 30 years ago, and Dolman is now a grandmother. But no breakthrough medication has emerged, she said. Nor do doctors fully understand how hormones interact with the disorder, which she thinks warrants urgent study.
Medication in the perinatal period is still, she said, “very much a balancing act.”
This article was originally published on Undark. Read the original article.