Shine: Antenatal experiences of expectant parents in pregnancies affected by spina bifida

Summary

Spina bifida develops early in the embryonic stage of pregnancy but is not usually detected until the midterm (20 week) ultrasound scan. 

Shine conducted a survey to assess the antenatal care experiences of parents to children with spina bifida. Volunteers were recruited via social media and 71 eligible (UK-based) responses were received, revealing numerous elements of antenatal care in need of significant improvement. Shine have published the findings and recommendations for improving antenatal diagnosis and care for spina bifida. 

Content

Shine believes that every parent has the right to expect:

• To hear the diagnosis and prognosis from a clinician who understands the complexity and variation in severity of spina bifida.
• The offer of information on spina bifida and Shine to take home at every appointment.
• To hear their baby described in a respectful manner.
• The opportunity to discuss their child with teams of clinicians experienced in the care of people with spina bifida.
• The offer of termination to be made without bias.
• Time at home to consider their options.
• The offer of termination to be made twice at the most, and for it to be clearly recorded on the notes that the parents-to-be are committed to the pregnancy.