Victoria Coble, 39, of Greensboro, North Carolina, was four months pregnant when she first started experiencing symptoms of COVID-19. With the birth of her son, things got even worse: She suffered severe anxiety, depression and difficulty concentrating, which escalated to nausea, chest pain, post-exertional malaise (PEM) and more.

At first, she had trouble connecting her pregnancy and postpartum symptoms with those common with long Covid. “At the time, I confused it all with postpartum depression,” Coble said. But four years later, the mother of two still struggles to get through the day.

According to experts, pregnant women are diagnosed with long Covid more often than previously thought, despite the lack of historical data and their symptoms often being confused with normal signs of pregnancy. All this makes motherhood and starting or expanding a family more difficult.

Although it is difficult to distinguish the symptoms of pregnancy from those of long-COVID disease, the persistence of symptoms is one of the most important distinguishing factors, says Dr. Ziyad Al-Aly, a global expert on long-COVID and director of research and development at the Veterans Affairs St. Louis Health Care System in St. Louis, Missouri.

“Pregnancy symptoms disappear over time, unlike the fatigue of long COVID and the malaise after exercise, which often persist,” Al-Aly said.

Pregnant women with long COVID are a poorly understood patient group. How often they develop the disease and what impact it has on their pregnancy and their children was largely unknown until recently. But new research is now beginning to solve a nearly five-year-old mystery. Experts want to better understand how developing long COVID during pregnancy affects mother and child, and how new mothers can care for their children while battling this debilitating disease.

In a study published this month in the journal Obstetrics and GynecologyResearchers found that nearly one in ten pregnant women developed long COVID after experiencing acute COVID-19 during pregnancy. Many of them subsequently developed severe symptoms, including PEM—a condition in which symptoms worsen after even minor physical or mental exertion—gastrointestinal problems, and brain fog consistent with those seen in the broader long COVID community. The numbers surprised researchers.

“As obstetricians, we typically care for a younger, mostly healthy population compared to other specialties,” said study author Torri Metz, MD, associate director of research for obstetrics and gynecology at the University of Utah Health in Salt Lake City, Utah. “That over 9% of this population had symptoms consistent with long COVID was a higher number than I would have expected.”

In addition, Al-Aly said, during the height of the pandemic, COVID anti-vax rhetoric spread like wildfire and became a battle for the hearts and minds of a vulnerable patient population. A small study published in the November 2022 issue of the journal Obstetrics The study found that even among women who were vaccinated later in pregnancy, anti-vaccination rhetoric increased their reluctance.

Lower vaccination rates due to early misinformation about the safety of COVID vaccinations during pregnancy may have led to an increase in the number of long-COVID cases in this patient population.

In pregnant women, the benefits of the COVID vaccine far outweigh the small risks of vaccination, Al-Aly said. In a study published this month, Al-Aly and his colleagues, The New England Journal of MedicineThe researchers found that vaccinations reduce the risk of developing Long COVID by 70 percent. “This applies to everyone, including pregnant women, who are also at risk of developing the disease,” said Al-Aly.

Medical gaslighting, common complications

Coble first showed symptoms of COVID-19 in January 2020, before testing was available in her area. She said that without a positive COVID test and because of her pregnancy, she experienced medical gaslighting from doctors who doubted her condition. “The doctors never listen to me and that’s dehumanizing,” she said.

For pregnant women who contract Long COVID, this comes at a sensitive time and can put undue pressure on mothers who are already experiencing a completely new phase of life, said Obstetrics and Gynecology Study author Vanessa Jacoby, MD, professor of obstetrics, gynecology and reproductive sciences and associate provost for clinical research at the University of California San Francisco.

In addition, experts say that women with COVID-19 have an increased risk of pregnancy complications such as premature birth and neurodevelopmental disorders than women who did not have COVID-19 during pregnancy. And a new study in Scientific reports The study found that people who contracted Long COVID during pregnancy had an increased risk of gestational hypertension, gestational diabetes and fetal intrauterine growth restriction, a condition in which the baby does not gain enough weight in the womb.

By and large, most treatments for long COVID are used to treat symptoms, and it is difficult to make general statements about their safety during pregnancy or breastfeeding. Women receiving treatment for long COVID should make sure that any medications they take to treat symptoms are also safe for their child.

Impact of Long COVID on children

Not only are new parents disproportionately affected by long COVID, researchers are also studying what it might mean for their children. Acute COVID can cause premature births and long COVID can cause pregnancy complications that can have later effects. Still, there is much we don’t know about the consequences for the children, and considering how common the condition can be, this is a gap in research that needs to be filled, Metz said.

Metz and Jacoby are working on an upcoming study that will collect data on this important and understudied patient cohort. The study, funded by the National Institutes of Health’s long-standing COVID RECOVER initiative, will enroll children who were infected with COVID as well as children of women who were infected with COVID during pregnancy. According to preliminary results from the study, children who were and were not exposed to maternal SARS-CoV-2 infection in the womb will undergo neurodevelopmental screening tests at 12, 18, 24, 36 and 48 months of age.

Experts say the impact on offspring is an important piece of the puzzle. We know you can contract Long COVID during pregnancy and that it can be devastating for new mothers. Now we need to know what it means for their children.

Coble is increasingly worried about her children and what will happen to them in the future. She is often unable to move and be with her children due to her extreme fatigue. She is close to tears when she talks about it.

“I just worry about how it’s going to affect them later on when their mom can’t play with them. It’s just so hard,” she said.