Contemporary Outcomes of a National Fetal Spina Bifida Surgery Service
Charlotte C Kik1,2, Yada Kunpalin1, Abhaya V Kulkarni3,4
1Fetal Medicine Unit, Department of Obstetrics and Gynaecology, Mount Sinai Hospital and University of Toronto, Toronto, Canada.
Insights
Open fetal surgery for spina bifida in Canada shows mixed developmental outcomes. While communication skills are strong, significant delays in gross motor function are common, similar to previous trials.
Area of Science:
- Pediatric Surgery
- Neurodevelopmental Pediatrics
- Fetal Medicine
Background:
- Open fetal surgery for spina bifida aims to improve outcomes.
- Contemporary data on these outcomes in Canada is limited.
Purpose of the Study:
- To assess current outcomes in Canadian fetuses undergoing open spina bifida surgery.
- Evaluate hydrocephalus treatment, motor, bladder, and neurodevelopmental function.
Main Methods:
- Prospective collection of data from 41 fetuses undergoing open spina bifida closure at the Ontario Fetal Center.
- Follow-up at least 1 year of age, assessing hydrocephalus, motor function, bladder function, and neurodevelopment using standardized tools.
Main Results:
- Of 24 patients followed, 33.3% required CSF diversion. Bladder management varied, with 43.5% needing medication. All could sit independently; 50% walked outdoors, with 25% unassisted.
- Gross motor development was significantly delayed in 91.7%, while 79.2% had typical communication/problem-solving skills. Fine motor skills showed mixed results.
Conclusions:
- Open fetal spina bifida repair in Canada results in a mixed developmental profile.
- Findings are consistent with the Management of Myelomeningocele Study (MOMs) trial.
- Further research into long-term functional outcomes is warranted.
Objective:
To assess contemporary outcomes of fetuses who underwent open fetal spina bifida surgery in Canada.
Methods:
Our clinical program prospectively collected outcomes of all consecutive fetuses who underwent open fetal spina bifida closure at the Ontario Fetal Center in Toronto and who were at least 1 year of age at the time of postnatal follow-up. We gathered information on the need for hydrocephalus treatment, motor function, bladder function, as well as neurodevelopment (Ages and Stages Questionnaire and Bayley's scales of infant development). Developmental outcomes were categorized as "Typical Development," "Possible Delay," or "Significantly Delayed."
Results:
Between 2017 and 2022, 41 fetuses underwent open fetal spina bifida closure. Twenty-four patients (58.5%) responded to the questionnaire at a median age of 46.5 months. Eight children (33.3%) required CSF diversion procedures. Bladder management included clean intermittent catheterization (43.5%), spontaneous voiding (34.8%), or both (21.7%), with 43.5% needing medication for overactive bladder. All patients could sit independently, with 50% walking outside and 50% crawling indoors. Among those walking outdoors (50%), 25% did so without orthotics or aid, 58.3% with orthotics, and 16.7% required additional walking aids. Most children demonstrated typical communication and problem-solving skills (79.2%), while gross motor development was significantly delayed in 91.7% of cases. Fine motor skills varied, with 56.5% showing typical development and 34.8% possibly experiencing delays.
Conclusions:
This study showed a mixed developmental profile among patients who underwent open fetal spina bifida repair, consistent with the MOMs trial findings.


