Pregnancy in Women with Disabilities: Past, Present, Future

In the latter years of my postgraduate training in obstetrics and gynaecology (mid-1990s), my program introduced “Continuity Clinics,” where residents each staffed our own general obstetrics and gynaecology clinic, allowing us to enjoy the experience of getting to know our own group of patients that we would follow over time. My very first Continuity Clinic patient was a young woman presenting for a new prenatal appointment. She was a primigravida, a part-time student, and a person with a disability. She’d had an above-the-knee amputation as a child after sustaining a traumatic injury and was wearing a prosthesis. My recollection of the encounter is that it was much like the hundreds of new prenatal visits I’d done before. I wasn’t all that concerned that her disability could be a risk factor for adverse pregnancy outcomes; at least there was nothing much in the literature to suggest so. It was something of a thrill when “my” first patient delivered “my” first baby in an uncomplicated vaginal birth at term. All these years later, I still have a copy of the newborn photo she gave me at her postpartum visit, a reminder of a happy, healthy outcome for mother and son.

Perhaps we unknowingly beat the odds. Evidence has been accumulating since then that, while most pregnancies in women with disabilities (WWD) have favourable outcomes, there are increased risks of perinatal complications including preterm birth and low birthweight infants (1). Recently, two different groups have shown that severe maternal morbidity (SMM) is increased among women with disabilities across the spectrum of physical, intellectual, and developmental, and sensory disabilities (2,3). In this issue of Paediatric and Perinatal Epidemiology, Horner-Willi and colleagues (4) essentially confirm these findings and make an important addition by conducting analyses in subgroups of individuals with disabilities, e.g., considering people with vision and hearing impairments separately and stratifying analyses for physical disabilities by underlying cause. Using a large, population-based California dataset, they found an almost three-fold increased risk of SMM among WWD overall. Risk was greatest for women with vision disabilities (a third of whom had pre-existing diabetes, adjusted relative risk [aRR] 4.04, 95% confidence interval [CI] 3.41, 4.78) and lowest for people who had hearing disabilities (aRR 1.99, 95% CI 1.49, 2.65). Among women with physical disabilities, risk of SMM was highest for those with injury-related impairments (such as spinal cord injury and limb amputation), (aRR 4.82, 95% CI 3.80, 6.12), and lowest for congenital disabling conditions (including spina bifida), (aRR 1.75, 95% CI 1.33, 2.31). These data further equip providers and pregnant people with disabilities who, until recently, had very little to inform their counseling and decision-making.

In 2010, the Eunice Kennedy Shriver National Institute of Child Health and Human Development convened a workshop on Pregnancy in Women with Physical Disabilities to summarize the extant literature, identify gaps in knowledge, and identify future research needs (5). At that time, U.S. Census data from 2005 indicated that 12% of women of childbearing age self-reported a disability and the number was expected to increase; data from 2016 now show that 18% of women of childbearing age self-identify as disabled (6). At the time of the workshop, pregnancy rates among women with disabilities were unknown; we now know that pregnancy prevalence is comparable between women with and without disabilities (7). In 2010, while there were ample data showing that women with disabilities in general were more likely to have socioeconomic disadvantages, difficulty accessing medical care (especially reproductive care), and unmet medical needs, we didn’t know whether these factors applied specifically to pregnant women with disabilities; we now know that they do (1-3).

The Horner-Johnson study (4) pushes the field another step forward because the dataset they analyzed, which includes roughly 6 million births in a diverse population, allowed drilling down to subsets of the disability population; results thus provide more precise information for WWD and their caregivers and address the “data desert” that frustrates both parties. Such large datasets have been critical for identifying disparities—especially in rare, serious outcomes—but have limitations. The need to rely on medical diagnostic coding for identifying individuals with disability tethers research to a medical view of disability, which only encompasses part of the story. The currently favored social model of disability highlights the fact that unaccommodating social and physical environments impose functional limitations on people with bodily or mental differences. As the authors note, diagnostic medical codes may not reveal all individuals with functional limitations and may identify people who have a diagnosis but no limitation(s). Further, though, administrative, and medical record data fail to account for the social components of disability (and social determinants of health generally), or the effects of a barrier-rich environment and an ableist society on perinatal outcomes for WWD and their infants.

Why has it taken so long to investigate and document these disparities in perinatal outcomes among people with disabilities? Historically, involuntary sterilization was used to prevent pregnancy in WWD, reflecting society’s discomfort with the concepts of sexuality and reproduction among people with disabilities. While these eugenic practices have largely been abandoned, present-day WWD still perceive that their pregnancies are met with disapproval and biases from their care providers, experiencing what the American College of Obstetricians and Gynecologists describe as “insidious barriers to health care for women with disabilities…ignorance, social prejudice, and pervasive negative attitudes about life with disability” (8).

Mitigating disparities in maternal outcomes among WWD will require that clinicians have greater knowledge of medical conditions that are associated with disability and whether and how they may directly affect the course and outcome of pregnancy. But without an accounting of the social and environmental forces at play in the lived experience of WWD, our understanding and ability to intervene and change outcomes will be incomplete. Studies elucidating both medical and social mechanisms for obstetrical disparities in WWD are prerequisites for the design of targeted interventions to improve pregnancy outcomes in this population.

Patients, researchers, and clinicians themselves recognize a yawning gap in training for providers on caring for people with disabilities. Patients feel their lives and conditions are not understood by their clinicians, eroding trust and confidence in the health care system. Researchers frequently call for enhancements to clinician training on disability as a key step to address what are now well-established disparities in perinatal outcomes for WWD. Ob-Gyn physicians say they are aware of special healthcare needs of WWD, but only 17% report receiving any training on the provision of healthcare to WWD and 92% endorse a need for more knowledge resources specific to pregnancy (9). We must do better.

I return to that newborn photo from time to time, curious about how my Continuity Clinic patient and her son have fared over the years, grateful that the excess pregnancy risk we now recognize she bore didn’t materialize for her. Let us commit ourselves to understanding more about disparities faced by pregnant WWD and strive to optimise perinatal health for all.