Open Spina Bifida: Why Not Fetal Surgery?

OBJECTIVE: The majority of patients counseled for prenatal open spina bifida repair (SBR) do not undergo fetal surgery. The aim of this study was to analyze the reasons for this phenomenon.

MATERIALS AND METHODS: The data of the first 160 patients seeking counseling or referred to the Zurich Center for Fetal Diagnosis and Therapy for prenatal SBR between December 2010 and March 2017 were retrospectively analyzed.

RESULTS: A total of 104 (65%) patients did not undergo prenatal SBR. Of this subgroup, 52% met the exclusion criteria, 35% decided to terminate pregnancy, 4% chose to continue pregnancy without fetal intervention, and 3% sought care in other European centers. In 6%, data about the ensuing course of pregnancy were not recorded. The main exclusion criteria were delayed presentation (30%), absence of hindbrain herniation (28%), and concomitant spinal anomalies (17%).

CONCLUSION: The high percentage of patients not qualifying for prenatal SBR underscores the necessity of a standard evaluation of every single patient at a qualified referral center. To allow a higher proportion of women carrying a fetus with open spina bifida to be timely and correctly informed about a potential fetal intervention, much more effort is mandatory to spawn correct, objective, and understandable information among all groups of people potentially exposed to this topic.