Maternal-fetal surgery for myelomeningocele: some thoughts on ethical, legal, and psychological issues in a Western European situation

• Published in: Child's nervous system 2017-08, Vol.33 (8), p.1247-1252
• Main Authors: Van Calenbergh, Frank, Joyeux, Luc, Deprest, Jan
• Format: Article
• Language: English
• Subjects: Europe; Female; Fetal Diseases - surgery; Fetal Therapies - ethics; Fetal Therapies - methods; Fetal Therapies - psychology; Fetus - abnormalities; Fetus - surgery; Focus Session; Humans; Jurisprudence; Medicine; Medicine & Public Health; Meningomyelocele - surgery; Neurosciences; Neurosurgery; Pregnancy
• ISSN: 0256-7040; 1433-0350
• DOI: 10.1007/s00381-017-3446-6

Background The results of the Management of Myelomeningocele Study (MOMS) randomized controlled trial have demonstrated that maternal-fetal surgery (MFS) for myelomeningocele (MMC) compared to postnatal MMC repair has clear neurological benefits for the child at 12 and 30 months of age. Level I evidence nevertheless does not provide answers to many questions in this delicate field. Since the beginning of 2012, our fetal center has been offering MFS for spina bifida aperta (SBA) to patients from different European and non-European countries, in a societal context where termination of pregnancy is the option chosen by most patients when being informed of this diagnosis. Methods We aim to explore in this text some of the ethical, legal, and psychological issues that we have encountered. Results For many of these questions, we do not have definite answers. A pregnant patient when diagnosed with a MMC fetus is a vulnerable subject. She needs to be referred to a highly specialized center with sufficient expertise in diagnosis and in all therapeutic options. Objective but compassionate counseling is of paramount importance. It is required that a multidisciplinary professional team obtains full voluntary consent from the mother after providing an appropriate information including diagnosis, short-, medium-, and long-term prognosis as well as benefits and harms of the fetal surgery. Conclusion The latter should be offered with full respect for maternal choice and individual assessment and perception of potential risks taking into consideration legislation in the fetal center and the parents’ country legislation.