Women With Intellectual and Developmental Disabilities Are an Invisible Obstetric Population

Hilary K. Brown, PhD; Virginie Cobigo, PhD; Yona Lunsky, PhD; Simone Vigod, MD, MSc, FRCPC


August 19, 2016

Intellectual and developmental disabilities (IDDs) are neurodevelopmental disorders characterized by varying degrees of limitation in cognitive and adaptive abilities, such as social skills and communication.[1] Although specific examples of IDDs include fetal alcohol syndrome, Down syndrome, and fragile X syndrome, most IDDs are mild disabilities of unknown etiology.[2] Once individuals with these mild disabilities leave school, they are often unidentified in population registries, leading them to be dubbed "the forgotten generation."[2]

Clinical and survey research has shown that these disabilities are associated with pervasive social and health disparities. Women with IDDs commonly experience poverty, unemployment, unstable housing, abuse, and social isolation.[3,4] They have high rates of unhealthy lifestyle behaviors and chronic medical conditions.[5,6] Over 50% have mental health problems, such as depression, anxiety, and psychotic disorders.[7] All of these issues are known risk factors for poor pregnancy outcomes.

Our study, published recently in BJOG: An International Journal of Obstetrics & Gynaecology, is one of the largest studies to focus on pregnancy outcomes in women with IDD.[8] Using a cohort of nearly 4000 deliveries to women with IDD over a 10-year period in Ontario, Canada, we showed that compared with those without IDD, women with IDD are at increased risk for preeclampsia, venous thromboembolism, and hemorrhage. In addition, their newborns are at increased risk for preterm birth, small for gestational age, and neonatal mortality. These findings suggest that there is substantial room to optimize outcomes in this population. Yet, there has been little intervention in this area.

Pregnancy and Stigma

The historical context of women with IDD explains the persistent assumption that pregnancy is a rare event in this population. In the early to mid-20th century, most adults with IDD were segregated in institutions. Involuntary sterilization was used to limit childbearing because of the societal perception that women with IDD were "deviant."[9] International standards now protect the rights of persons with disabilities,[10] and involuntary sterilization is illegal in most developed countries.[9]

These changes, along with a shift from institutionalization to community-based living, have profoundly affected the reproductive experiences of women with IDD. They increasingly have opportunities to engage in relationships, and many desire to form families.[9] Reports from midwifery services suggest a growing number of women with IDD seeking obstetric care.[11] New research from Canada shows that although the overall fertility rate in women with IDD is lower than that in women without IDD, age-specific fertility rates in young women with and without IDD are similar.[7] Childbearing in this population, however, remains highly stigmatized.[9]

There is a lingering assumption that women with IDD are unable to raise children, despite evidence that IQ is a poor predictor of parenting adequacy.[12] Innovative parenting programs have shown that many women with mild IDD, with support, can be effective parents.[13] There is a need for development of resources for healthcare providers to support women with IDD earlier in their reproductive trajectories: before and during pregnancy.


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