The care of children with spina bifida remains one of the most challenging aspects of pediatric neurosurgery. The Spinal Cord Program at BCCH cares for over 350 children and families who have myelomeningocele, lipomyelomeningocele or meningocele, in addition to others with spinal cord injuries and tumours. The multidisciplinary team comprises physicians from the disciplines of pediatrics, neurosurgery, orthopedic surgery, urology, general surgery, psychiatry and other professionals from nursing, social work, physiotherapy, occupational therapy and psychology, nutrition services.
Treatment for children with spina bifida begins in utero and is based on an excellent prenatal diagnosis program, which includes triple marker screening, high resolution ultrasonography and fetal MR imaging. Multidisciplinary consultation with the team and medical geneticists provides affected families with the likely outcome of current management based on the knowledge of their child’s anomaly. Publications focusing on fetal hydrocephalus, postnatal treatment outcome, expected clinical outcome, and mode of delivery have been produced by the clinic team.
Post natal management is based on sound established principles for protection of neural tissue and the optimization of function. Regular follow-up visits are planned well in advance and are based on peer reviewed program evaluations. Patient satisfaction is part of these reviews and has been expanded to focus on the graduates of the clinic. The cardinal principle of the management of children with Spina Bifida is the optimization of function. The multidisciplinary team of pediatricians, urologists, orthopedic surgeons, physiotherapists, occupational therapists, social workers and nutritionists provides this, using urodynamics, neuroimaging, electrophysiology and radiology to supplement clinical assessments. While offering optimal treatment to patients with spina bifida, the clinic has also been active, in conjunction with the Department of Medical Genetics, in lobbying for folic acid fortification in flour and for aggressive pre-conception education regarding folic acid as a preventative agent at provincial and national levels.
The academic productivity of the clinic was established at its inception and continues through the regular publication and presentation of scientific works. Members of the clinic contribute to the Society for Research into Hydrocephalus and Spina Bifida and are supporters of the Spina Bifida Association of British Columbia and the Canada. Key academic works have included randomized trials of antibiotics for the control of urinary sepsis, basis science experiments to define methods for bladder augmentation, evaluation of the methods of delivery of patients with myelomeningocele and the definition of clinical significance for intrauterine treatment of myelomeningocele.