Abstract
Introduction: Spina bifida guidelines recommend neurosurgical involvement in prenatal counseling to inform decision-making between prenatal and postnatal myelomeningocele (MMC) repair. This study examines whether families with MMC presenting to one fetal center had timely neurosurgical prenatal counseling (nPNC) encounters and assesses modifiable and non-modifiable treatment-determining factors. Methods: History and timing of nPNC were quantified among infants undergoing postnatal and prenatal MMC repair, pregnant patients referred, and MMC studies in a fetal MRI database (2015–2023). Fetal repair exclusions, presentation timing, social determinants, and reported rationale for not selecting offered fetal therapy were assessed. Results: Nearly all patients (34/35; 97%) engaged in nPNC, 82% prior to 24 weeks GA. Fourteen patients were excluded from fetal repair for lack of hindbrain herniation (43%), obstetric exclusions (21%), fetal exclusions (21%), suspected closed defect (7%), and delayed presentation (7%). These patients ultimately underwent postnatal repair (71%), and pregnancy termination (14%). The 20 fetal-repair-eligible patients selected fetal repair (50%), postnatal repair (45%), and pregnancy termination (5%). Reasons for declining fetal repair included risk (55%) and cost (22%). Conclusions: Among MMC families presenting to a regional fetal therapy center, nPNC was widely extended, in a mostly timely fashion. Very few were deterred from fetal repair by potentially modifiable barriers.
Plain Language Summary
Spina bifida guidelines recommend neurosurgeons help talk to families diagnosed with fetal myelomeningocele, to help them make decisions about what kind of repair treatment to select. These options include repair both after or before birth (that is, in the womb, or prenatal repair). This study examines whether families with myelomeningocele presenting to one fetal center had timely conversations with neurosurgeons, and assesses factors that helped them decide. Nearly all patients (34/35; 97%) engaged in counseling with neurosurgeons prior to birth. Most (82%) happened prior to 24 weeks gestational age. Fourteen patients were excluded from prenatal repair for lack of hindbrain herniation (43%), pregnancy-related issues (21%), fetus-related issues (21%), the wrong kind of defect (7%), and delayed timing of prenatal conversation (7%). These patients instead had after-birth repair (71%), and pregnancy termination (14%). The 20 fetal-repair-eligible patients chose fetal repair (50%), after-birth repair (45%), and pregnancy termination (5%). Reasons for not having fetal repair included patient concerns about risk (55%) and cost (22%). In summary, at one regional fetal therapy center, conversations with neurosurgeons before birth were widely extended to families with myelomeningocele, in a mostly timely fashion. Very few were deterred from fetal repair by potentially modifiable barriers.
