Pregnancy in Women with Disabilities©
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 women 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. Women with disabilities have reported that health care providers’ initial reactions to the idea of pregnancy is 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 medication may be needed to ensure the best preconception and prenatal care for women with disabilities.
Prenatal Care Issues. Many women with disabilities report difficulty finding a health care provider with experience in providing obstetrical care to women with disabilities 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 change 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 women with disabilities 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 spasm, 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.
Postpartum. Many women with disability 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 a 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.
Childcare. 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 open 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 women with disabilities are reluctant to ask their health care providers questions about childcare issues.
1) Identify/discuss the role of the nurse at each of the phases identified above.
2) Identify the accommodations that might be needed for women with the following types of disabilities:
a) Physical disability that limits mobility and affects sensation
b) Deafness or hearing loss acquired as an adult
c) Blindness or vision loss
d) Communication impairment
e) Intellectual or developmental disability
3) What resources can you identify for women with the 5 types of disabilities identified above?
Iezzoni, L.I., Wint, A.J., Smeltzer, S.C. & Ecker, J. L., (2015). “How did that happen?" Public responses to women with mobility disability during pregnancy. Disability and Health Journal. 8(3), 380-387.
Mitra, M., Long-Bellil, L., Iezzoni, L I., Smeltzer, S. C., & Smith, L.D. (2016). Pregnancy among women with physical disabilities: Unmet needs and recommendations on navigating pregnancy. Disability and Health Journal. 9(3), 457-463.
Rogers, J. (2005). The Disabled Woman's Guide to Pregnancy and Birth. New York: Demos Publishing Company.
Rogers, J. (2010). Pregnancy planning for women with mobility disabilities. In: J.H. Stone, M. Blouin, editors. International Encyclopedia of Rehabilitation. http://cirrie.buffalo.edu/encyclopedia/en/article/260/
Thierry, J. (2006). The importance of preconception care for women with disabilities. Maternal and Child Health Journal. 10 (Suppl 1), S175–S176.
Smeltzer, S. C. & Wetzel-Effinger, L. (2009). Pregnancy in women with spinal cord injury.
Topics in Spinal Cord Injury Rehabilitation. 15(1), 29–42.
Smeltzer, S. C. (2007). Pregnancy in women with disabilities. Journal of Obstetric,
Gynecological, and Neonatal Nursing. 36(1), 88-96.
Tarasoff, L. A. (2015). Experiences of women with physical disabilities during the perinatal period: A review of the literature and recommendations to improve care. Health Care for Women International, 36, 88–107.
Resources and Links
Through the Looking Glass. Site provides extensive information, links to other sites, and sources of adaptive equipment for parents with disabilities. http://www.lookingglass.org
Center for Research on Women with Disabilities (CROWD). Site provides resources for women with disabilities considering pregnancy and results of research conducted by CROWD staff.
International Encyclopedia of Rehabilitation. J. Rogers provides information on preconception care to postpartum period with information for women and health care providers.
Pregnancy in Women with Disabilities: A Meet Our Researchers Video. Presents an interview o in this interview with National Institutes of Health (NIH) pregnancy expert Dr. Caroline Signore, an OB/GYN physician who experienced a spinal cord injury.
Selected On-line Resources by Specific Disability for Women with Disabilities
http://www.amputee-coalition.org/inmotion/sep_oct_03/baby.html (Amputee Coalition)
http://americanpregnancy.org/birth-defects/cerebral-palsy/ (American Pregnancy Association)
http://nhsforthvalley.com/wp-content/uploads/2014/01/Tips-for-Midwives-caring-for-Pregnant-Women-with-Hearing-Impairment.pdf (National Health Service Scotland)
Disability Resources – General
http://www.lookingglass.org (Through the Looking Glass)
https://www.bcm.edu/research/centers/research-on-women-with-disabilities/topics/sexuality-and-reproductive-health/pregnancy-delivery (Center for Research on Women with Disabilities)
Multiple Sclerosis http://www.nationalmssociety.org/Living-Well-With-MS/Family-and-Relationships/Pregnancy (National Multiple Sclerosis Society)
Osteogenesis Imperfecta (Osteogenesis Imperfecta Foundation)
http://www.oif.org/site/PageServer?pagename=Pregnancy (Osteogenesis Imperfecta Foundation)
http://americanpregnancy.org/birth-defects/spina-bifida/ (American Pregnancy Association)
Spinal Cord Injury
http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.page&id=1586 (United Spinal Association)
http://www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Obstetric-Practice/Obstetric-Management-of-Patients-with-Spinal-Cord-Injuries (American Congress of Obstetricians and Gynecologists)
Copyright Suzanne C. Smeltzer, Bette Mariani, & Colleen Meakim, Villanova University College of Nursing, January 28, 2017