Newborn babies of mothers with a disability have a mild to moderate elevated risk of complications, says a new report, and more needs to be done to help these moms before and during pregnancy.
The population-based cohort study, led by Assistant Professor Hilary Brown, comprised all hospital singleton live births in Ontario, Canada from 2003 to 2018 comparing outcomes for newborns of women with and without a disability. The study detected an elevated risk of complications such as preterm birth, low birthweight, high birthweight, neonatal morbidity, neonatal abstinence syndrome (NAS), and NICU admission.
“An important point to note is 1 in 8 pregnancies are to people with a disability, and so this is quite a few mothers who could benefit from better support,” said Professor Brown. “The other piece is there is heterogeneity among the disabled population, so yes, the overall increase in risk is small, but when you look at specific groups like mothers with intellectual disabilities, many of those risks were almost double.”
Increased preconception care is a key plank of tackling the disparity, said Professor Brown. “There’s increasing recognition that people enter pregnancy with a whole host of social and health factors that should have been addressed prior to the pregnancy, and if you start during the pregnancy it’s too late. This can be a particular issue for mothers with disabilities because they’re more likely to enter pregnancy with a chronic condition, with mental health challenges, with poverty and all sorts of barriers to health care, in addition to experiencing a disability.”
In addition, moving into the prenatal period, mothers with disabilities require more accessible care. “People with disabilities experience barriers accessing prenatal care, so moms with intellectual disabilities, for example, are more likely to receive prenatal care late and to receive fewer than the number of recommended visits.” The report advocates for getting people into prenatal care on time, and making sure prenatal care is accessible and free from barriers, whether these are physical barriers, communication barriers or attitudinal barriers from physicians.
Finally, mothers with disabilities also face barriers in the newborn period. “Newborn care spaces like neonatal intensive care units aren’t set up with disabled parents in mind,” noted Prof. Brown. “You can’t get a wheelchair into a NICU, for example. So, what happens to that mom who uses a wheelchair and whose baby is in the NICU? There has to be a recognition that there’s going to be all sorts of parents who need to access these spaces and we can’t forget about disability in this context.”
Prof. Brown notes the stigma faced by mothers with disabilities and wants the study to help emphasize the needs of an underserved group. “There’s this whole history of eugenics and forced sterilization. A lot of these moms were told they shouldn’t have a baby, a lot of them worry that their baby will be taken away, so in all this work we’re doing, we’re trying to use the data to improve healthcare through things like better physician training so that these mothers have more positive perinatal care experiences.”