The average lifespan of individuals born with most congenital malformations has vastly improved in the past decades, allowing the majority to survive through the reproductive years. Because the presence of a physical disability typically does not affect fertility or the desire for a family, it is important to understand the course of pregnancy among affected women. Evidence shows that women with varying definitions of disability are more likely to have babies born with low birth weights or prematurely. The limited research available suggests that relevant risk factors for these birth outcomes tend to be more common in pregnant women with varying disabilities compare to the general population. For example, cigarette smoking, alcohol drinking, and obesity increase risks of adverse outcomes and appear to be disproportionately higher in pregnant women with disabilities. However no study to date has examined pregnancy exposures in relation to adverse birth outcomes among women with physical disabilities. In women of childbearing ages, physical disabilities most often stem from congenital muscular and neuromuscular defects (cMND), defined as spina bifida, cerebral palsy, muscular dystrophy, and limb anomalies (contractures, missing or shortened). Impairments in mobility and dexterity can impact activities of daily living and result in chronic pain, sleep disturbances, and psychosocial problems. Medications needed for the treatment of these symptoms, and other behavioral coping mechanisms, may be associated with birth outcomes, raising further the need to study the course of pregnancy and birth outcomes among cMND-affected women. This study will take advantage of rich data resource - the Boston University Slone Epidemiology Center Birth Defects Study. From 1976 to 2015, over 68,000 mothers of babies born with and without congenital anomalies were asked detailed questions about a range of events and exposures during pregnancy for the purpose of identifying risk factors for birth defects. Women were specifically asked if they were born with spina bifida or any anomalies of the brain, head, spine, spinal cord, muscles, bones, arms, or legs. This study will compare the 132 women who were identified as having a cMND to 528 unaffected women for the following pregnancy exposures: cigarette smoking, alcohol intake, pre- pregnancy body mass index, vitamin supplementation, kidney/bladder infection, pain medications, sleep medications, and psychoactive medications. Comparisons of common adverse birth outcomes will include premature birth, low birth weight, and macrosomia. In addition, mediation analyses will measure the amount of an association between cMND and birth outcomes that is mediated through pregnancy exposures. An estimated 212,000 US women of childbearing ages have a cMND, for whom pregnancy may require special services. It is necessary to understand the course of pregnancy and outcomes among women with congenital physical disabilities as a step toward ensuring optimal care and risk prevention. This project takes advantage of a unique data resource to provide valuable information for this purpose.
Little is known about the course of pregnancy among women affected with congenital physical disabilities. With the use of data collected from affected and unaffected women, results from this project will inform our understanding of pregnancy exposures and birth outcomes among women with congenital physical disabilities, as a step toward ensuring optimal care and risk prevention.
