Although most women with disabilities are able to become pregnant, to have normal labor and delivery experiences, and to care for their children without problems, some women with disabilities have experiences that require some thought and advanced planning on the part of the women, their families, and their health care providers.
Responses to Pregnancy in Women with Disabilities
Although women with disabilities are increasingly choosing to become pregnant and to become mothers, they may encounter negative experiences from others who doubt their ability to become pregnant, carry the baby to term, deliver safely and care for a newborn. As a result, it is important for nurses to recognize that mothers with disabilities may be hesitant to seek care because they anticipate such negative reactions from others, including health care providers.
Although preconception care is recommended for many women with disabilities to ensure that they are in good health prior to conceiving because of the potential for health issues, many women do not seek preconception care and some even forgo prenatal care because of possible negative reactions from health care clinicians. These women have reported that health care providers’ initial reactions to the idea of pregnancy are to try to discourage them from considering pregnancy, to assume that they are seeking termination of their pregnancy, or to make negative comments about them being irresponsible in considering pregnancy and motherhood.
Thus, it is important to acknowledge their efforts to ensure a healthy pregnancy and to avoid negative verbal and non-verbal responses to women with disabilities considering pregnancy or who are already pregnant at the time of their first visit to a health care provider for obstetric care.
Women with disabilities who are taking medication as part of the management of their disabling condition are often concerned about the effect of those medications on a fetus. Collaboration among several types of health care providers about the potential effects of the medication may be needed to ensure the best preconception and prenatal care for these women.
Prenatal Care Issues
Many women with disabilities report difficulty finding a health care provider with experience in providing obstetrical care to these women or who is willing to assume care for them during pregnancy. Women with disabilities that limit their mobility have reported inaccessible physician offices and clinics, not being weighed even once during their pregnancy, and receiving no help in transferring to a high, non-adjustable exam table in the absence of an adjustable table.
During the prenatal period, women with disabilities that affect their mobility are at higher risk than women without disabilities for several health issues. These include a high risk for urinary tract infections, impaired balance, and gait due to changes in their center of gravity, increased risk for falls, and changes in bowel and bladder management. Women who are wheelchair users are at increased risk for pressure ulcers during pregnancy and for growing out of their wheelchairs because of weight gain. Women with spinal cord injuries at or above the 6th thoracic level (T6) are at increased risk for a disorder called autonomic dysreflexia (AD), with potentially life-threatening hypertension. It may also occur but is less common in women with spinal cord injuries at T7 to T10 and other neurological disorders such as multiple sclerosis and Guillain-Barre syndrome. AD can occur with labor and delivery, a urinary tract infection, a pressure ulcer, or a full bowel. Because of the seriousness of this complication, women with spinal cord injuries and others at risk for AD, typically receive care from an OB/Gyn provider who provides care for women at high risk.
Women with disabilities often find prenatal classes uninformative and not helpful because the class instructors are not knowledgeable about their disabilities and possible effects on pregnancy, labor, and delivery. Therefore, nurses and others providing prenatal care need to make special efforts to identify the questions and concerns of women with disabilities about prenatal care, labor and delivery, and the post-partum period, including strategies or modifications that may be needed to enable them to care for their infants. Efforts to anticipate challenges that may occur during labor and delivery should be undertaken to minimize women’s concerns and risk for negative outcomes. In addition, attention should be given early in pregnancy to identify modifications and to acquire specific childcare equipment that may be helpful to women with disabilities to care for their infants.
Labor & Delivery Issues
With appropriate planning and management, most women with disabilities have labor and delivery experiences similar to those of other pregnant women. Most of these women prefer to have a vaginal delivery. More women with disabilities than women without disabilities have Cesarean sections, although disability by itself is not an indication for Cesarean section. It is important to realize that even women with neurological disorders, such as multiple sclerosis or spinal cord injury, that affect sensation often experience spasms, abdominal pressure, and pain or discomfort associated with contractions.
In some cases, obstetrical care providers refer women with disabilities to the anesthesia team during the last month or so of pregnancy to ensure that any issues that might affect anesthesia, labor, and delivery are considered prior to the onset of labor. For example, women with spinal cord injuries or musculoskeletal disabilities (e.g., spina bifida, osteogenesis imperfecta, cerebral palsy) often have specific issues that may require special planning prior to receiving epidural anesthesia for delivery.
Many women with disabilities find themselves on postpartum nursing units in inaccessible rooms, making their recovery and self-care difficult. Depending on the type of delivery they had (vaginal delivery vs. Cesarean section) and the nature of their disability, they may have difficulty managing an episiotomy incision following vaginal delivery.
Many women with disabilities plan to breastfeed their babies although some women need modifications in breastfeeding positions and strategies to hold their baby for breastfeeding. Nurses who are knowledgeable and sensitive to the needs of women with disabilities and their preferences for breastfeeding can be very helpful in assisting women in breastfeeding. Referral to lactation consultants may also be helpful to any woman wanting to breastfeed, including women with disabilities.
Most women with disabilities, including those with severe disabilities, are very resourceful and find ways to do an excellent job in taking care of their infants. Some modifications may be needed, such as a side-opening crib that opens like a door and can be opened by a mother from her wheelchair. Because of concern that they might be considered incompetent mothers if they ask too many questions, some of these women are reluctant to ask their health care providers questions about childcare issues.