The Heller School for Social Policy and Management
National Research Center for Parents with Disabilities

The Pregnancy Experience of a Woman with Cerebral Palsy: Interacting with Providers and the Community

Women approach childbirth expecting high-quality, compassionate care from their providers. When these expectations are fulfilled expectations and women have a sense of autonomy over the process, these positive experiences can contribute to postpartum emotional wellbeing and satisfaction.1 Provider interactions during childbirth are important for all women, though there is a dearth of research specific to women with disabilities.2 In the United States, “more than one million women of childbearing age report they need assistance with daily living due to a disabling condition,” according to the National Institute of Child Health and Human Development.2 A recent case study on the pregnancy experience of a woman with physical disabilities identified three overarching issues related to provider interactions with pregnant disabled women, including: 

  • Limited knowledge regarding disability among clinicians,
  • Inaccessible medical facilities and equipment,  and a
  • Lack of comprehensive research to inform providers about disability and postpartum experiences.1,3

This case study focused on one woman’s experience navigating provider interactions as a woman with cerebral palsy. Cerebral palsy is a motor disability; roughly 400,000 adults in the United States have the condition.4 Cerebral palsy does not affect fertility, and while women with cerebral palsy may have a heightened rate of cesarean delivery, there is no clear evidence of elevated risk for other birth complications such as miscarriages, malformations, or pregnancy-induced hypertension.4,5

Study Goals

  • To describe the experiences of one mother with cerebral palsy with her healthcare providers and her community before, during, and after her pregnancy.
  • To share advice for medical providers and support systems providing care for pregnant women with physical disabilities.

Demographics

Age 

35-40

Race

White

Ethnicity

Non-Latinx

Education

Graduate school

Government benefits

None

Income

>150% of Federal Poverty Level

Introducing the Case Study

This case study describes the experiences of one woman with cerebral palsy, including positive provider interactions, as well as negative ones. She is married and lives with her husband. To conceive, she underwent in vitro fertilization (IVF). Before this pregnancy, she struggled with IVF conception for many years. The findings of this report include the participant’s retrospective perceptions of her pregnancy, and advice for other pregnant women with disabilities. 

Data: Quotes

Interactions with Service Providers: Positive: “I heard him say, ‘Did you just ask her? Just ask her what she needs. She’s eminently reasonable and knows what she needs.’ And I heard him advocating for me. And I was like thank you, God.” “[She] was very pro-vaginal birth for me, which is unheard of for a woman with CP who has no abduction. She was very proud, and they talked collaboratively. They talked with me.” “I was given the option. And even when things got hairy towards the end, they still gave me the option.” Negative: “She [the hematologist] said, ‘Oh, you better have a care plan in place for this baby. Who’s going to help you with this baby?’ She was really obnoxious. And I just said you’re looking at the care plan.” “As women with disabilities, we know [discrimination] when we hear it because we’ve heard it our whole lives. And especially when you’re lumped in as this homogeneous group, ‘women like you.’” "It was horrid. So I was fighting and fighting and fighting to get the Foley catheter out, and they would not take it out." “No one here understands what cerebral palsy is, and no one understands what my baseline is, and everyone thinks that I am more disabled than I am.” Interactions with Family and Community: Positive: “It was meeting the children of other parents with disabilities that really started to change my mind.” “And we found out she was healthy, and we called all our family and everybody that was left. And we blasted it out on Facebook. So everyone found out on my thirty-seventh birthday. It was the best birthday of my life.” Negative: “People that were less than supportive of me having a child, I had eased out of my life over five years of infertility treatment. And unfortunately, that also includes my mother, my birth mother.” “I didn’t see anybody like me who had had children.”

Key Findings 

  1. Advocacy for patient autonomy by providers improved the patient’s experience and emotional wellbeing. 
  2. This woman encountered dismissive attitudes from clinicians, who made incorrect assumptions about her abilities. 
  3. Support from other families in which a parent has a disability was important, but also an unmet need. 
  4. This woman’s experiences are consistent with experiences of other women with disabilities documented by another study.3  Taken together, this research suggests the need for provider training and additional opportunities for pregnant women with disabilities to learn from and support one another.  

Policy and Program Implications

This case study indicates that providers can improve the quality of care patients with disabilities receive by addressing and / or reducing their biases and working collaboratively with patients. Therefore, formal education and training on obstetric care should incorporate training on caring for pregnant women with disabilities. 

References 

  1. Moyzakitis, W. Exploring women’s descriptions of distress and/or trauma in childbirth from a feminist perspective. Evidence Based Midwifery. 2004 June; 2(1):8-14. 
  2. Tarasoff, L. Experiences of women with physical disabilities during the perinatal period: A review of the literature and recommendations to improve care. Health Care Women Int. 2013 September; 36(1): 88-107. doi:10.1080/07399332.2013/815756
  3. Mitra M, Long-Bellil L, Iezzoni L, Smeltzer S, Smith L. 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
  4. Signore C, Spong C, Krotoski D, Shinowara N, Blackwell S. Pregnancy in women with physical disabilities. Obstetrics & Gynecology. 2011; 117(4):935-947. doi:10.1097/aog.0b013e3182118d59
  5. Having Children When You Have Cerebral Palsy. Cerebral Palsy Guidance. https://www.cerebralpalsyguidance.com/cerebral-palsy/living/having-children/. Published 2018. Accessed October 8, 2018. 

Additional Information

  1. Cerebral Palsy. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/cp/data.html. Published 2018. Accessed October 8, 2018.
  2. Fenech G, Thomson G. Tormented by ghosts from their past: A meta-synthesis to explore the psychosocial implications of a traumatic birth on maternal well-being. Midwifery. 2014;30(2):185-193. doi:10.1016/j.midw.2013.12.004
  3. Lipson J. Pregnancy, birth, and disability: Women’s health care experiences. Health Care Women Int. 2000;21(1):11-26. doi:10.1080/073993300245375
  4. Mitra M, Clements K, Zhang J, Iezzoni L, 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
  5. Stavsky M, Mor O, Mastrolia S, Greenbaum S, Than N, Erez O. Cerebral palsy- trends in epidemiology and recent development in prenatal mechanisms of disease, treatment, and prevention. Front Pediatr. 2017;5(21). doi:10.3389/fped.2017.00021
  6. Thomson G, Downe S. Widening the trauma discourse: the link between childbirth and experiences of abuse. Journal of Psychosomatic Obstetrics & Gynecology. 2008;29(4):268-273. doi:10.1080/01674820802545453

Funding Statement 

Research reported in this brief was supported by The National Institutes of Health, Eunice Kennedy Shriver National Institute of Child Health & Human Development (Grant No. R01HD082105) and the National Institute on Disability, Independent Living, and Rehabilitation Research (Grant No. 90DPGE0001-01-01). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding agencies.