CW: Ableism & Death
American women have the highest maternal mortality rate among high-income countries. Outcomes are worse for women who are part of a minority group. To better understand the maternal health of pregnant women with intellectual and developmental disabilities, researchers from Drexel University’s Policy and Analytics Center in the A.J. Drexel Autism Institute examined Medicaid data to identify perinatal and postpartum outcomes.
Women with IDD were younger at the time of their first observed delivery. They also had a lower proportion of live births (66.6% versus 76.7%), and had greater incidence of obstetric problems. Those problems include gestational diabetes (10.3% vs 9.9%), gestational hypertension, (8.7% vs 6.1%;) and preeclampsia, (6.1% vs 4.4%.)
Women with IDD were also more likely to experience postpartum anxiety or depression within a year of delivery than women without IDD. The findings show that this is the case both overall and by subgroup.
Molly Sadowsky, co-author and project director of the Autism Institute’s Policy and Analytics Center, described how the findings point to many opportunities for policymakers, providers, and researchers. Reproductive health education, perinatal care, and delivery services must be adapted to provide comprehensive and specific support to pregnant women with intellectual and developmental disabilities.
“Findings from this study underscore an urgent need for attention on Medicaid in supporting birthing people with intellectual and developmental disabilities throughout the perinatal period,” Sadowsky said. “It’s vital that differences in access to and coordination of postpartum care, as well as related differences in risk for postpartum depression and anxiety, continue to be examined.”
Overall, pregnancy is common among disabled women in the U.S. Willi Horner-Johnson, an Oregon Health and Science University professor of public health, co-authored a 2022 study on health disparities among pregnant disabled women. Horner-Johnson and her colleagues found that more than 20% of all women who give birth in the United States identify as having a disability.
Disabled women also have an 11 times greater risk of mortality from pregnancy, according to Jess Davidson, the communications director for the American Association of People with Disabilities.
“I know all too well the fear that comes with living with that kind of risk,” Davidson said while speaking at the U.S. Capitol in May. “I felt deep in my bones as a young woman that I was made for motherhood.” Davidson was diagnosed with a condition in her mid-20s that raised her odds of miscarriage or maternal mortality.
Despite these findings, many doctors don’t know how to properly care for disabled women who are pregnant. Tiffany Grzankowski has Ehlers Danlos Syndrome. Ehlers-Danlos syndrome (EDS) is a hereditary condition that affects collagen production and function. It affects nearly every organ system and can cause considerable morbidity and mortality EDS can cause several complications, including artery rupture, organ rupture, joint dislocation, chronic pain, and fatigue.
When Grzankowski was pregnant, her symptoms worsened. “I was throwing up every day for the entire pregnancy”. “If I stood up for too long, like, say I was grocery shopping or something, I’d have to use one of the scooters because I would faint”, Grzankowski told NC Health News.
Doctors didn’t have much advice for Grzankowski. They suggested she drink something with salt in it. Grzankowski was left to figure it out on her own.
Disabled women deserve fair treatment when it comes to reproductive healthcare and childbirth. A disability doesn’t automatically mean a woman can’t have a healthy pregnancy. However, medical professionals should understand the unique needs of disabled women who are pregnant.
Sources:
Donnelly-DeRoven, Clarissa. “1 In 5 Births Nationwide Are to People with Disabilities, But These Patients Don’t Always Get the Care They Need.” North Carolina Health News, North Carolina Press Association, 25 Oct. 2022, https://www.northcarolinahealthnews.org/2022/10/25/1-in-5-births-nationwide-are-to-people-with-disabilities/.
Horner-Johnson, Willi, et al. ‘Perinatal Health Risks And Outcomes Among US Women With Self-Reported Disability, 2011–19’. Health Affairs, vol. 41, no. 10, Health Affairs, Oct. 2022, pp. 1477–1485, https://doi.org/10.1377/hlthaff.2022.00497.
Miklovic, Tyler and Vanessa Sieg. Ehlers-Danlos Syndrome . National Library of Medicine , 29 May 2023, https://www.ncbi.nlm.nih.gov/books/NBK549814/.
Shea, Lindsay, et al. ‘Perinatal and Postpartum Health Among People With Intellectual and Developmental Disabilities’. JAMA Network Open, vol. 7, no. 8, American Medical Association, 2024, pp. e2428067–e2428067.
Shutt, Jennifer. “Forced Sterilizations for People with Disabilities Decried by Members of Congress .” Virginia Mercury, States Newsroom , 28 May 2024, virginiamercury.com/2024/05/28/forced-sterilizations-for-people-with-disabilities-decried-by-members-of-congress/.