Pregnancy and Childbirth

This section includes information and resources related to disability aspects of preconception care, prenatal care, labor and delivery, and postpartum care.

Improving preconception health can lead to improved pregnancy and birth outcomes.^1,2 Women with certain disabilities may be highly vulnerable to multiple preconception risk factors associated with adverse pregnancy outcomes.² It is important that women find a healthcare provider who understands these risks and unique considerations and is willing to learn about their disability.

• Meeting with your provider before conception can help identify and reduce risk factors related to your disability and risks faced by all women including smoking, alcohol and other drug misuse, lack of exercise, and mental health conditions associated with poor reproductive health outcomes.¹
• The provider will take your health history and ask about your disability and any other health conditions that could affect your pregnancy, such as diabetes or high blood pressure. At this visit, be sure to describe your experiences with:
  • Bladder management issues, urinary tract infections, pressure sores, autonomic dysreflexia, and any other disability-related conditions.
  • Alcohol use or other drugs including tobacco.
  • Living in a stressful or abusive environment, or other lifestyle factors that could affect maternal or infant health.¹
  • Disability-related medications or any other prescription, over-the-counter medications or dietary or herbal supplements.
• During your preconception visit, your provider may recommend certain vaccinations, such as the flu shot or the “Tdap” shot to protect against tetanus, diphtheria, and pertussis.
• Your provider may also recommend you take folic acid, which is a B vitamin that can help prevent major birth defects of the baby’s brain and spine.

• Stop drinking, smoking, or using drugs if you are trying to get pregnant.                           
• Avoid harmful chemicals and other toxic substances such as fertilizer and insect spray.  
• Reach and maintain a healthy weight.
• Get help for abuse.
• Know your family’s health history.
• Get help for depression and other mental health issues.

Prenatal care is the health care you get while you are pregnant. Pregnancy typically lasts about 40 weeks, which are grouped into three trimesters. Visit WomensHealth.gov for information about what typically happens to a mother and baby during these three stages.

Prenatal care is important for both the mother and her baby. Pregnant women who do not get regular prenatal care are at high risk of experiencing pregnancy complications. Their babies may experience serious and sometimes life-threatening problems, such as low birthweight.³ Routine checkups usually occur monthly through week 28, twice monthly through week 36, and then weekly until birth. For more detailed descriptions of what typically occurs during prenatal visits, visit the National Institute of Child Health and Human Development’s website.

Women with high-risk pregnancies will probably need to visit their doctors more often. Women with physical disabilities may experience secondary conditions⁴ including overweight or obesity, ⁵ high blood pressure, and certain other conditions that contribute to a high-risk pregnancy. For more information regarding high-risk pregnancies, visit the National Institute of Child Health and Human Development’s website.

Education

• Women with disabilities do not necessarily receive adequate prenatal education.⁶
• Disparities. Women with disabilities may be twice as likely to begin prenatal care after the first trimester and receive inadequate care compared to their non-disabled peers.² Also, typical prenatal classes offered outside of an OBGYN setting may not be as beneficial or applicable to women with disabilities.⁷

Assistive Devices

• Women with mobility limitations may need recommendations or prescriptions for a larger sized wheelchair and additional devices for transfers and ambulation.^7,8
• Medication Management: Although providers should modify or stop certain disability-related and other medications during pregnancy,^9,8 women are advised to confirm appropriate management of medications that may have the potential to harm their babies.
• Women should demand that their providers address any disability-specific needs and concerns during the prenatal period. If providers deny or ignore these requests, they have the right to file a disability discrimination report.

Prenatal Genetic Screening or Testing

• While pregnant, women may be offered either an optional prenatal genetic screen or a prenatal genetic test. A genetic screen is used to measure the level of risk for certain birth defects or diseases in the unborn child, while a prenatal genetic test can accurately diagnose certain conditions, including Down syndrome. However, given that some people use genetic testing to prevent the birth of a baby with Down syndrome or other disabilities, members in the disability rights movement consider such testing dangerous and ableist.^10,11 Remember, genetic testing is optional.

Risk for UTIs

• Women with disabilities face a high risk for UTIs (urinary tract infections) during pregnancy, especially those with neurogenic bladders, which are bladder dysfunctions commonly experienced by women with SCI, MS, and other disabilities.^8,12

Change in Symptoms During Pregnancy

• Some disabling conditions (e.g., lupus) have been associated with increased symptoms during pregnancy,8 whereas others (e.g., multiple sclerosis) may be associated with fewer symptoms.¹³

Risk for Pressure Ulcers

• Women who use wheelchairs may be at higher risk for developing pressure ulcers due to pregnancy-related weight gain and transfer difficulties.¹⁴

Signs of Labor

• A full-term pregnancy is 39 or 40 weeks, but pregnant women are advised to start watching for signs of labor at about 28 weeks. During pregnancy, you should call your doctor if you have any of the following signs:
• Contractions become stronger at regular and increasingly shorter intervals
• Continuous lower back pain and cramping
• Your water breaks (either a large gush or a continuous trickle)
• You have a bloody (brownish or reddish) mucus discharge

Pain Management

• Pain during labor and vaginal delivery can be managed with:
  • Natural methods such as breathing and relaxation techniques
  • Medications such as narcotics, epidural or spinal blocks

• Consulting with an anesthesiologist before delivery is important, especially for women with spinal cord injury at risk for autonomic dysreflexia during labor pain and delivery.⁸ However, use of anesthesia during delivery may cause complications in some women with disabilities.^{15, 8, 16}
• Women with paralysis may not be able to feel contractions;¹⁷ however, they can obtain a contraction monitor to use at home,¹⁸ or use other pain indicators for labor such as increased spasticity, abdominal tightening, or pelvic pressure.¹⁹
• Women with disabilities have higher rates of cesarean section (C-section) than non-disabled women.^20-22
  • C-section decisions are sometimes made for women with disabilities with no advanced planning with their provider or in the absence of medical necessity.^23,8 Unnecessary cesarean delivery in women with disabilities should be avoided when possible.²²
  • C-section decisions are not always made based on medical necessity but rather based on the presence of disability.^24,8 Remember, a woman does not need to have a C-section simply because she has a disability.
  • C-sections can introduce specific risks for women with disabilities, such as those related to anesthesia and complications due to prior abdominal surgeries.^24,8
  • Recovery from C-sections, which generally involves pain and activity limitations, may be especially difficult for women with existing functional limitations.^{21, 25, 26}
• Some women with disabilities will need assistance with positioning and keeping their legs apart during a vaginal birth.²⁴

The postpartum period begins immediately after the baby is born and lasts about 6-8 weeks. During this time, a new mother experiences various physical and emotional changes while caring for herself and her baby.

• During the first 24 hours after giving birth, the medical staff will monitor the mother’s heart rate, blood pressure, bleeding, and urine output.²⁷
• In follow-up visits, the medical staff may assess the mother’s overall well-being, weight, urinary and bowel function, pain, healing of any wounds or stitches, and experiences with breastfeeding as indicated. Any changes in mood (especially depression) or behavior should be discussed during this time and referrals for further evaluation and resources provided. Providers should ask about birth spacing, family planning, and discuss contraceptive options and methods.²⁷ Remember, new mothers do not have to have a normal period to become pregnant again.²⁸

Postpartum Depression

• New mothers often experience sadness or “baby blues” in the days following childbirth. However, if those feelings last for more than two weeks with significant distress, the mother may be experiencing major depressive disorder²⁹ also referred to as “postpartum depression”.³ Mothers should share these feelings with their provider who can offer resources and make referrals for further evaluation as needed. It is also especially important for new mothers to contact their provider if they are extremely sad or anxious, unable to care for themselves or their baby, or feeling like they could hurt themselves or their baby.

• Women with disabilities may be at risk for adverse pregnancy and childbirth experiences including increased rates of preeclampsia, cesarean delivery, impaired fetal growth, infant born small for gestational age, and preterm birth. ^2,7,30-33
• There is a heightened risk for prolonged recovery from the birth experience, extended hospitalization, and the infant being admitted to the neonatal intensive care unit (NICU).³⁴
• Mobility limitations may increase.³⁵
• There is a high risk of postpartum depression in women with disabilities,^34,36 women with a history of depression,³⁷ and women with experiences of abuse.³⁸ Knowing the link between past depression and abuse with postpartum depression is relevant as both depression and abuse are highly prevalent in women with disabilities.^39-41
• Mothers with spinal muscular atrophy have reported experiencing weakness during pregnancy that persisted after delivery.¹⁶
• Adaptive devices and recommendations for feeding or breastfeeding may be helpful. Adaptive baby care devices and techniques, assistive technology, home modifications, accessible furniture, and other accessibility arrangements may be necessary.^2,8

For additional information regarding adaptive parenting resources, visit Through the Looking Glass.

There are increasing numbers of people, including people with disabilities, in the LGBTQ+ community who are choosing or desiring to become parents. For more information, please see the LGBTQ+ Pregnancy subpage.

Women with disabilities face multiple inequities and barriers that can negatively impact their pregnancy-related experiences and outcomes. For detailed information on disparities and barriers related to pregnancy and childbirth in the context of disability, please see the Pregnancy Disparities subpage.

Videos

• Leslie Waters TED Talk: “Mind Your Own Pregnancy”
• Pregnancy in Women with Disabilities: National Institutes of Health (NIH) Dr. Caroline Signore, an OB/GYN physician who experienced a spinal cord injury. [Video]
• Shepherd Center | Women with SCI and Pregnancy Video

General Articles

• Baylor College of Medicine | Resources for Reproductive Health in Women with Disabilities
• Pregnancy and Neuromuscular Disease

Unplanned Pregnancy

• Unintended Pregnancy in Women with Disabilities | Medicalxpress

Parenting with a Disability

• Through the Looking Glass. Site provides extensive information, links to other sites, and sources of adaptive equipment for parents with disabilities.
• Rocking the Cradle: Ensuring Rights of Parents with Disabilities
• Information on pregnancy, disability, and parenting
• Protection from Discrimination in Child Welfare Activities
• ADA | Protecting Rights of Parents with Disabilities

Amputation

• Amputee Coalition: Having a Baby

Cerebral Palsy

• American Pregnancy Association: Cerebral Palsy

Deafness

• National Health Service Scotland: Tips for Midwives Caring for Pregnant Women with Hearing Impairment

Multiple Sclerosis

• National Multiple Sclerosis Society: Pregnancy

Osteogenesis Imperfecta 

• Osteogenesis Imperfecta Foundation: Pregnancy Women Who Have OI

Spina Bifida

American Pregnancy Association: Spina Bifida

Spinal Cord Injury

• United Spinal Association: Pregnancy and Women with SCI
• American Congress of Obstetricians and Gynecologists: Obstetric Management of Patients with Spinal Cord Injuries

• Health Care Provider Resource Guide | National League of Nursing

• Planning for Pregnancy
• How to Have a Healthy Pregnancy

Substance Abuse

• Treatment The Substance Abuse and Mental Health Services Administration (SAMHSA) has a treatment facility locator. 
• Alcoholics Anonymous® (AA) is self-supporting, and its only membership requirement is a desire to stop drinking. Find a meeting location in your area.
• Alternatives to 12-Step Programs for Alcohol Abuse

Tobacco Use

• All states have quit lines with counselors who are trained specifically to help smokers quit. Call  1-800-QUIT-NOW (1-800-784-8669) to connect directly to your state's quit line.
• CDC List of Resources for Quitting Tobacco Use [For Smokers and their Families]

• American Pregnancy Association- List of Resources
• Childbirth Connection - Resources for Planning on Giving Birth
• NIH Process of Childbirth

• March of Dimes | Postpartum care resources
• Maternal Health Task Force | Postnatal care

Overview of Identifying Disability Discrimination https://www.equalityhumanrights.com/en/advice-and-guidance/disability-discrimination   

Filing a Discrimination Complaint https://www.ada.gov/criminaljustice/cj_complaint.html

National Council on Disability- Assisted reproductive technologies and rights https://ncd.gov/publications/2012/Sep272012/Ch11

Selecting Against Difference: Assisted Reproduction, Disability and Regulation | FSU Law https://ir.law.fsu.edu/cgi/viewcontent.cgi?article=1344&context=lr

Disabling Dreams of Parenthood: The Fertility Industry, Anti-discrimination, and Parents with Disabilities| UMN Law https://scholarship.law.umn.edu/cgi/viewcontent.cgi?article=1111&context=lawineq

Fertility Rights and Responsibilities Fact Sheet https://www.reproductivefacts.org/news-and-publications/patient-fact-sheets-and-booklets/documents/fact-sheets-and-info-booklets/fertility-rights-and-responsibilities/

1. Johnson K, Posner SF, Biermann J, et al. Recommendations to improve preconception health and health care—United States. A report of the CDC/ATSDR preconception care work group and the select panel on preconception care. MMWR Recomm Rep. 2006;55(RR-6):1–23.
2. Mitra M, Long-Bellil LM, Iezzoni LI, Smeltzer SC, Smith LD. Pregnancy among women with physical disabilities: Unmet needs and recommendations on navigating pregnancy. Disabil Health J. 2016;9(3):457-463. doi: 10.1016/j.dhjo.2015.12.007.
3. Office on Women's Health. Postpartum depression. Updated May 14, 2019. Accessed Aug. 29, 2020.
4. Nosek MA, Hughes RB, Petersen NJ, et al. Secondary conditions in a community-based sample of women with physical disabilities over a one-year period. Arch Phys Med Rehabil. 2006;87:320-327. doi:10.1016/j.apmr.2005.11.003
5. Nosek MA, Robinson-Whelen S, Hughes RB, et al. Overweight and obesity in women with physical disabilities: Associations with demographic and disability characteristics and secondary conditions. Disabil Health J. 2008;1(2):89-98. doi:10.1016/j.dhjo.2008.01.003
6. Blackford K, Richardson H, Grieve S. Prenatal education for mothers with disabilities. J Adv Nurs. 2000;32:898–904.
7. Mitra M, Clements KM, Zhang J, Iezzon LI, Smeltzer S, Long-Bellil L. Maternal characteristics, pregnancy complications and adverse birth outcomes among women with disabilities. Med Care. 2015;53(12):1027-1032. doi:10.1097/MLR.0000000000000427
8. Litchman ML, Tran MJ, Dearden SE, Guo J, Simonsen SE, Clark L. What women with disabilities write in personal blogs about pregnancy and early motherhood: Qualitative analysis of blogs. JMIR Pediatr Parent. 2019;2(1):e12355. doi: 10.2196/12355
9. Smeltzer SC. Pregnancy in women with physical disabilities. J Obstet Gynecol Neonatal Nurs. 2007;36(1):88-96.
10. Clowse MEB, Eudy AM, Revels J, Sanders GD, Criscione-Schreiber L. Rheumatologists’ knowledge of contraception, teratogens, and pregnancy risks. Obstet Med. 2018;11(4):182-185. doi: 10.1177/1753495X18771266
11. Boardman FK, Hale R. How do genetically disabled adults view selective reproduction? Impairment, identity, and genetic screening. Mol Genet Genomic Med. 2018;6:941–956. doi: 10.1002/mgg3.463
12. Parens E, Asch A. Disability rights critique of prenatal genetic testing: reflections and recommendations. Ment Retard Dev Disabil Res Rev. 2003;9(1):40-47.
13. Nevedal A, Kratz AL, Tate DG. Women's experiences of living with neurogenic bladder and bowel after spinal cord injury: Life controlled by bladder and bowel. Disabil Rehabil. 2016;38(6):573-81. doi: 10.3109/09638288.2015.1049378.
14. National Multiple Sclerosis Society. Pregnancy and reproductive issues. Updated 2020. Accessed Aug. 29, 2020.
15. Liepvre L, Dinh H, Idiard-Chamois A, et al. Pregnancy in spinal cord-injured women, a cohort study of 37 pregnancies in 25 women. Spinal Cord. 2017;55:167–171. doi:10.1038/sc.2016.138
16. Elsheikh BH, Zhang X, Swoboda KJ, et al. Pregnancy and delivery in women with spinal muscular atrophy. Int J Neurosci. 2017;127(11):953-957. doi:10.1080/00207454.2017.1281273
17. Smeltzer SC, Wint AJ, Ecker JL, Iezzoni LI. Labor, delivery, and anesthesia experiences of women with physical disability. Birth. 2017;44(4):315–324. doi:10.1111/birt.12296
18. Gavin NI, Benedict MB, Adams EK. Health service use and outcomes among disabled Medicaid pregnant women. Women's Health Issues. 2006;16(6):313–322.
19. McLain AB, Massengill T, Klebine P. Pregnancy and women with spinal cord injury. Arch Phys Med Rehabil. 2016;97:497-498.
20. Spinal Outreach Team. The impact of a spinal cord injury on pregnancy, labour and delivery: What you need to know. Reviewed August 2019. Accessed Aug. 29, 2020.
21. Chitnis S. Samant P. Physical disabilities in pregnant women: Impact on care and pregnancy outcome. Int J Reprod Contracept Obstet Gynecol. 2017;6(4):1306-1311. doi:10.18203/2320-1770.ijrcog20171383
22. Darney BG, Biel FM, Quigley BP, Caughey AB, Horner-Johnson W. Primary cesarean delivery patterns among women with physical, sensory, or intellectual disabilities. Women's Health Issues. 2017;27:336–344.
23. Horner-Johnson W, Biel FM, Darney BG, Caughey AB. Time trends in births and cesarean deliveries among women with disabilities. Disabil Health J. 2017;10(3):376–381. doi:10.1016/j.dhjo.2017.02.009.
24. Long-Bellil L, Mitra M, Iezzoni LI, Smeltzer SC, Smith LD. Experiences and unmet needs of women with physical disabilities for pain relief during labor and delivery. Disabil Health J. 2017;10(3):440-444. doi:10.1016/j.dhjo.2017.02.007
25. Jackson AB, Wadley V. A multicenter study of women's self-reported reproductive health after spinal cord injury. Arch Phys Med Rehabil. 1999;80(11): 1420–8. doi:10.1016/s0003-9993(99)90253-8
26. Jackson AB, Lindsey LL, Klebine PL, Poczatek RB. Reproductive health for women with spinal cord injury: pregnancy and delivery. SCI Nurs. 2004;21(2):88–91.
27. World Health Organization [WHO]. Postnatal care for mothers and newborns: Highlights from the 2013 World Health Organization 2013 guidelines. Updated April 2015. Accessed August 29, 2020.
28. Bouchard T, Fehring RJ, Schneider M. Efficacy of a new postpartum transition protocol for avoiding pregnancy. J Am Board Fam Med. 2013;26(1):35-44. doi:10.3122/jabfm.2013.01.120126
29. Segre LS, Davis WN. Postpartum depression and perinatal mood disorders in the DSM. Postpartum Support International. Updated June 2013. Accessed Aug. 29, 2020.
30. Houtchens MK, Edwards NC, Schneider G, Stern K, Phillips AL. Pregnancy rates and outcomes in women with and without MS in the United States. Neurology. 2018;91:e1559–e1569.
31. Iezzoni LI, Yu J, Wint AJ, Smeltzer SC, Ecker JL. Prevalence of current pregnancy among US women with and without chronic physical disabilities. Med Care. 2013;51(6):555-562. doi:10.1097/MLR.0b013e318290218d
32. Morton C, Le JT, Shahbandar L, Hammond C, Murphy EA, Kirschner KL. Pregnancy outcomes of women with physical disabilities: A matched cohort study. PM R. 2013;5:90–98.
33. Signore C, Spong CY, Krotoski D, Shinowara NL, Blackwell SC. Pregnancy in women with physical disabilities. Obstet Gynecol. 2011;117(4):935–947. doi:doi.org/10.1097/AOG.0b013e3182118d59
34. Mitra M, Clements KM, Zhang Y, Smith LD. Disparities in adverse preconception risk factors between women with and without disabilities. Matern Child Health J. 2016;20(3):507-15. doi: 10.1007/s10995-015-1848-1.
35. Long-Bellil L, Mitra M, Iezzoni LI, Smeltzer SC, Smith L. The impact of physical disability on pregnancy and childbirth. J Women's Health. 2017;26(8):878–885. doi:doi.org/10.1089/jwh.2016.6157
36. Ghidini A, Healey A, Andreani M, Simonson MR. Pregnancy and women with spinal cord injuries. Acta Obstet Gynecol Scand. 2008;81:1006 –10.
37. Myers ER, Aubuchon-Endsley N, Bastian LA, et al. Efficacy and safety of screening for postpartum depression. Agency for Healthcare Research and Quality (US), Rockville (MD). Updated 2013. Accessed Aug. 29, 2020.
38. Ross LE, Dennis C. The prevalence of postpartum depression among women with substance use, an abuse history, or chronic illness: a systematic review. J Women's Health. 2009;18(14):475-486. doi: 10.1089/jwh.2008.0953
39. Hughes RB, Robinson-Whelen S, Taylor HB, Petersen N, Nosek MA. Characteristics of depressed and non-depressed women with physical disabilities. Arch Phys Med Rehabil. 2005;86(3):473-479.
40. Hughes RB, Nosek MA, Robinson-Whelen S. Correlates of depression and rural women with physical disabilities. J Obstet Gynecol Neonatal Nurs. 2007;36(1):105-114. doi: 10.1111/j.1552-6909.2006.00122.x
41. Hughes RB, Lund EM, Gabrielli J, Powers LE, Curry MA. Prevalence of interpersonal violence against community-living adults with disabilities: A literature review. Rehabil Psychol. 2011;56(4):302-319.

Funded by the National Institutes of Health, National Library of Medicine (Grant #G08 LM012702) and Paralyzed Veterans of America Educational Foundation (Grant #848).

Page updated October 2020