A qualitative interview study on successful pregnancies in women with spina bifida

Published:November 11, 2021DOI:https://doi.org/10.1016/j.jpurol.2021.10.025



      Improvements in antenatal medicine and surgical management for conditions associated with spina bifida such as hydrocephalus have extended the lifespan for individuals with spina bifida (SB) into adulthood. Decisions and education regarding reproductive care and pregnancies for patients with spina bifida are increasingly important. Pregnancy in these patients can be particularly challenging due to physical limitations, previous abdominal surgery for urinary or bowel management and presence of a ventriculoperitoneal shunt. To date, little research has examined the unique challenges that women with spina bifida face during pregnancy.


      The purpose of this descriptive study is to characterize the successful pregnancy histories of SB women and describe how pregnancy affected their mobility as well as bladder and bowel management.

      Study design

      We conducted semi-structured interviews with women followed in our adult multidisciplinary SB clinic who previously had successful pregnancies. Questions regarding perinatal issues, obstetrical complications, urinary tract infections (UTI) and neurological changes were asked. Baseline mobility, bladder and bowel management were compared with changes during and after pregnancy.


      121 women of childbearing age were followed per year by our adult multidisciplinary spina bifida clinic between 2009 and 2016. We identified 6 women who successfully carried 8 pregnancies to term. There were no miscarriages. Four women had ventriculoperitoneal (VP) shunts. No children were born with neural tube defects. Mean age at first pregnancy was 23.5 years. Average gestational age at delivery was 37 weeks. 50% of the women had a spontaneous vaginal delivery. Five of six women intended to get pregnant; only one patient consumed folic acid regularly prior to pregnancy. Two of six women had bladder augmentation surgery, one of whom had urologic changes during pregnancy that persisted after childbirth. The other patient had a concomitant bladder neck sling procedure and did not have urologic issues during pregnancy. 50% of the patients experienced bladder-bowel dysfunction during their pregnancy. While 67% patients had full baseline ambulatory function, 4 patients had decreased mobility and required additional assistance during pregnancy. All returned to their baseline functionality afterwards.


      Summary TableChanges and complications during pregnancy.
      Pregnancy characteristics
      Age at first pregnancy, mean 23.5 ± 3.7
      Weeks of gestation, mean 37.2 ± 4.65
      Number of pregnancies
       1 4 (67%)
       2 2 (33%)
      Prior lower urinary tract reconstruction 2 (33%)
       Bladder augmentation 2 (100%)
       Bladder neck sling 1 (50%)
      Ventriculoperitoneal shunt-related complications 0 (0%)
      Diagnosis of UTI 4 (67%)
      Worsened urinary incontinence 3 (50%)
      Worsened constipation 1 (17%)
      Decreased mobility 4 (67%)
      Pre-eclampsia 3 (50%)
      Mode of delivery
       C-section 3 (50%)
       Vaginal 3 (50%)
      Complications during delivery 1 (17%)
      Live births with neural tube defects 0 (0%)



      SB (Spina Bifida), CIC (clean intermittent catheterization), UTI (urinary tract infection)
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