"He told me it would be extremely selfish of me to even consider [having kids]": The importance of reproductive health to women with spina bifida and the lack of support from their providers.
Courtney S Streur, Christine L Schafer, Valerie P Garcia and 4 others
PMID 31239106WHAT IT FOUND
Women with spina bifida described poor understanding of pregnancy ability, provider discouragement, and unprepared care.
Five of six women who had been pregnant had an unplanned pregnancy because they assumed they could not get pregnant.
Key findings
01All participants reported a deficient understanding of their reproductive health or capability to get pregnant, and five had an unintended pregnancy because they assumed they could not get pregnant.
02Eighty percent had considered having children, but many feared how pregnancy would affect their bodies, miscarriage or inability to carry, or passing spina bifida to a child.
03Participants described provider opposition, unprepared counseling, and that feeling supported depended more on a provider's willingness than on experience with pregnant spina bifida patients.
STILL TO COME
How it was doneWhat they found
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What it does not show
Twenty-five women from one Midwestern tertiary referral center, so experiences may not represent other regions or care systems. Women who did not speak English or had intellectual disability affecting answers were excluded. One recruited woman was excluded because she was uncertain about her spina bifida diagnosis. The study reports women's perceptions and experiences, not measured pregnancy outcomes or provider performance. The small sample cannot show how experiences differ by spina bifida type or severity.
Declared interests
The article metadata lists NIH extramural and non-U.S. government research support; all authors declared no conflicts of interest.
The easy way to misread this
Do not read this as proof that clinicians caused unintended pregnancies or that provider training will improve outcomes. It is a qualitative report of women's experiences, not a measured effect, and it included only 25 women from one center.