Anne Branigin, Washington Post
December 28, 2021
People with disabilities face much higher risks during pregnancy. Researchers are only beginning to understand how.
A new study fills in gaps about the health risks pregnant women with disabilities face.
Alarming maternal mortality rates in the United States have received increasing attention from researchers, lawmakers and journalists in recent years. But while racial and ethnic disparities have been a central concern for many — Black women are three to four times as likely to die of pregnancy and birthing complications as White women — less research has focused specifically on people with disabilities.
A study published this month fills in crucial gaps about the health risks pregnant women with disabilities face, finding that they have a significantly higher risk of dying from pregnancy and childbirth than their non-disabled counterparts. They were also more likely to experience all the most severe illnesses associated with maternal mortality.
The research, published in the Journal of the American Medical Association (JAMA) Network Open, a peer-reviewed, open-access medical journal, found pregnant women with disabilities were at higher risk for a slate of pregnancy complications, including blood clotting, infection and hemorrhaging. They were also 11 times as likely to die of pregnancy or birthing as their non-disabled counterparts.
Jessica Gleason, a research fellow of perinatal and pediatric epidemiology at the Eunice Kennedy Shriver National Institute of Child Health and Human Development, led the study.
To Gleason, the findings highlight the systemic barriers women with disabilities encounter getting medical care — before they ever get pregnant.
“We can’t just put this all down to personal, individual health choices,” she said. “There are a lot of societal factors that contribute to these poor health outcomes and prenatal care.”
To learn more about the risks women with disabilities face during their pregnancies, researchers combed through a large, comprehensive data set of medical records for deliveries from 19 hospitals across the United States between January 2002 and January 2008. They compared the medical charts of 2,074 pregnant women with a documented disability (including physical, intellectual and sensory disabilities) with 221,311 pregnant women who did not.
Earlier studies found women with disabilities had higher risks for a number of pregnancy complications, including preterm birth, hypertensive disorders, gestational diabetes and Caesarean delivery, but not much was known beyond those conditions, said Gleason.
Gleason cautioned that some of the findings, such as the elevated risk of maternal mortality, could be inflated because the total number of women with disabilities in the study was relatively low. But the overall results were consistent across the board: Pregnant women with disabilities faced more severe health outcomes than their non-disabled peers, she said.
Not only were disabled women at higher risk for pregnancy and delivery-related complications — including preeclampsia (a pregnancy-related hypertensive disorder that could be fatal) and gestational diabetes — they were also more likely to have conditions that can lead to death during childbirth, such as heart attacks, infection and blood clotting.
Pregnant women with disabilities also had higher risk of obstetric intervention: Medical professionals were more likely to give patients oxytocin to stimulate labor; use forceps, vacuums and other devices to extract the fetus; or deliver babies via Caesarean sections.
According to Gleason, this data lines up with previous qualitative studies in which pregnant women with disabilities described their pregnancy and birthing experiences to researchers.
“Women with disabilities often are not allowed to attempt vaginal delivery,” noted Gleason. While the data doesn’t explicitly find a provider preference for C-sections, which generally have greater health risks than vaginal births, Gleason said medical records showed women with disabilities were more likely than those without to be given Caesareans without a clearly defined medical reason.
This combination of factors — a delivery method that is riskier, plus higher rates of severe maternal illnesses — can create a “perfect storm” that could endanger the lives of pregnant people with disabilities, Gleason said.
In an accompanying paper, Hilary Brown, an assistant professor at the University of Toronto at Scarborough, called the research an “important contribution” to existing knowledge about pregnant women with disabilities.
“Even when these complications do not result in death, they have significant implications for families,” wrote Brown, “including separation of mothers and newborns at a time that is critical for bonding and breastfeeding, as well as potential long-term negative impacts on women’s well-being.”
According to Brown, whose research focuses on maternal and child health for people with disabilities and chronic disease, “women with disabilities have long been ignored in obstetric research and clinical practice.”
“Their invisibility stems from a history of eugenic practices, including institutionalization and sterilization, imposed on people with disabilities throughout the 20th century,” Brown wrote. Today, women with disabilities are still stigmatized when it comes to their sexuality, reproductive health and desire to raise a family, she added.
But some medical providers have told researchers that they aren’t trained to treat pregnant patients who are disabled. Patients often do not know how their disability or related medications could impact their pregnancy and vice versa, and could have difficulty figuring out the cause of their symptoms. Worldwide, pregnant women with disabilities have reported feeling as though health-care workers dismissed their concerns, lacked the knowledge to help them or seemed unwilling to help.
There are other significant barriers to prenatal care for women with disabilities, Gleason noted. Their families may not support their pregnancy, and when they attempt to get care, their medical provider may not have the facilities, materials or staff to treat patients effectively. The office space or exam table may not be accessible to disabled patients, Gleason said. And some women with visual, speech and hearing impairments have reported that their providers couldn’t communicate with them effectively.
The study, which used data from before the Affordable Care Act was signed into law, also found that pregnant women with disabilities were more likely to live in poverty (other research has shown this is true of disabled people generally).
To help ensure people with disabilities have safer, healthier pregnancies, Brown called for mandatory disability training for obstetricians, midwives and other health-care professionals. More research also needs to be done on the intersection of race and disability, she said: Disability was overrepresented among people of color, who already experience stark disparities in maternal morbidity and mortality.
Gleason said additional research is needed to better understand the causes of these risks, as well as to understand how different kinds of disabilities impact maternal outcomes. But healthier pregnancies start well before a person gets pregnant, she noted.
For example, while people without disabilities may get reproductive health counseling from their primary care provider, which helps them to understand their options and individual risks, the same counseling often isn’t extended to women with disabilities, said Gleason. Some health-care workers have wrongly assumed that their disabled patients are not sexually active.
Having health problems is also “very expensive,” she added, and unless there are larger improvements to living conditions and health-care access for people with disabilities, the impact of smaller interventions could be limited.
“There’s this misconception for women entering prenatal care that this can be the time to intervene on all these health issues,” said Gleason. “We should really be focusing on women’s preconception health in general to improve pregnancy outcomes.”
Anne Branigin is a staff reporter for The Lily. Previously, she worked at the Root covering news, politics, health and social justice movements through the lens of race and gender.