Woman With Disabilities: Navigating Pregnancy Planning

Resource

Planning to become pregnant and start a family can and should be an exciting time for women. However, women with disabilities (WWD) can face additional challenges and hurdles. As we’ve discussed in our previous articles, The Challenge of Becoming Pregnant and Overcoming Physical Barriers, finding doctors who are experienced with WWD or who have accessible equipment can be challenging. Many physicians are not adequately trained to work with WWD, as “Ob-Gyn physicians…are aware of the special healthcare needs of WWD, but only 17% report receiving any training…and 92% endorse a need for more knowledge resources specific to pregnancy.” (Signore, 2022). Further, some doctors hold incorrect assumptions that WWD are less likely to conceive and that their infertility rates are higher than they actually are, creating harmful misconceptions about infertility. Navigating the societal stigma, isolation, and internalized doubts about motherhood can be overwhelming. Addressing these barriers through counseling and peer support is critical.

 

WWD can be empowered and should be proactive in their medical care when planning to become pregnant. By doing research and staying up to date and informed about their care and medical advances, WWD can improve their chances for a healthy pregnancy and delivery. Build your team. By discussing your plans with the doctors that you already work with, i.e. PCP, Ob-Gyn, OT, PT, and registered dietician, you can design a customized plan of care to meet your needs.

 

Pregnancy for women with disabilities can involve unique risks, such as complications during delivery or preexisting conditions. “While most pregnancies in women with Disabilities (WWD) have favorable outcomes, there are increased risks of perinatal complications including preterm birth and low birth weight infants.” (Signore, 2022). Another important consideration is medication. “The main risk fetuses are exposed to during pregnancy … is exposure to drugs and therapies. In fact, people with disabilities often take medications that cannot be suspended and whose effects over pregnancy are not known. Careful medication administration should be carried on before and during pregnancy to ensure the minimum risk possible for both mother and baby.” (D’Angelo 2020). Having a doctor who knows how to assess and manage these risks is important for the well-being of both the mother and the infant. Unfortunately, systemic issues, like the lack of proper medical coding, can make it more difficult for providers to know what specific care a patient requires.

 

Specialized care can effectively manage risks associated with pregnancy for WWD. “ Nutritional counseling is also an important part of the prenatal care process. For example, taking the recommended dosage of folic acid is a strong preventative measure for spina bifida.. Other nutrients, such as iron, calcium, vitamin D, DHA, and iodine are also important for growth and development. Dieticians and other healthcare professionals can work with women to create a practical nutrition plan to ensure that they’re getting the necessary nutrients to promote healthy fetal development.

 

Pregnancy planning can feel overwhelming, but working with the right team of professionals who understand how to manage the associated risks can increase chances for a healthy pregnancy. By staying informed and advocating for themselves, WWD can be empowered in their medical care when preparing for pregnancy.  

 

If you or someone you know is a WWD and has had a successful pregnancy and would like to share their story, please email us at info@differentandable.org.  We’d love to hear from you. 

References & Resources:

Special thanks to Director Connie Lam

NYU Langone Orthopedic Hospital

Initiative for Women with Disabilities

Elly and Steve Hammerman Health & Wellness Center

Becker, H., Andrews, E., Walker, L. O., & Phillips, C. S. (2021). Health and well-being among women with physical disabilities after childbirth: An exploratory study. Women's Health Issues, 31(2), 140-147. https://doi.org/10.1016/j.whi.2020.10.007

Byrnes, L., & Hickey, M. (2016). Perinatal care for women with disabilities: Clinical Considerations. The Journal for Nurse Practitioners. https://www.npjournal.org/article/S1555-4155(16)30300-2/pdf 

D'Angelo A, Ceccanti M, Fiore M, Petrella C, Greco A, Porrari R, Gencarelli S, Ralli M, Vitali M, Ferraguti G, Galeoto G, Valente D, Framarino Dei Malatesta M, Messina MP. Pregnancy in women with physical and intellectual disability: psychiatric implications. Riv Psichiatr. 2020 Nov-Dec;55(6):331-336. doi: 10.1708/3503.34890. PMID: 33349725.

National Council on Disability. (2019). Quality-Adjusted Life Years and the Devaluation of Life with Disability: Part of the Bioethics and Disability Series. Washington, DC: National Council on Disability. Retrieved from http://www.ncd.gov

National Council on Disability. (2012). Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children. Washington, DC: National Council on Disability. Retrieved from http://www.ncd.gov

Powell, R. M., Mitra, M., Smeltzer, S. C., Long-Bellil, L. M., Smith, L. D., Rosenthal, E., & Iezzoni, L. I. (2019). Adaptive parenting strategies used by mothers with physical disabilities caring for infants and toddlers. Health & Social Care in the Community, 27(4), 889-898. https://doi.org/10.1111/hsc.12706

Signore, C. (2022). Pregnancy in women with disabilities: Past, present and future. Paediatric and Perinatal Epidemiology, 36(6), 769-770. https://doi.org/10.1111/ppe.12897

https://www.access-board.gov/mde/

New York Times: These Doctors Admit They Don’t Want Patients with Disabilities

https://www.nytimes.com/2022/10/19/health/doctors-patients-disabilities.html

 

The Doctor Won’t See You Now: Why Do Barriers to Healthcare for Women with Disabilities Persists?

https://womensenews.org/2024/06/the-doctor-wont-see-you-now-part-two-why-do-barriers-to-healthcare-for-women-with-disabilities-persist/

https://www.marchofdimes.org/find-support/topics/pregnancy/vitamins-and-other-nutrients-during-pregnancy