Search the hub

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.  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.

Spina bifida is a developmental condition affecting the brain and spine, often leading to physical and cognitive impairments, and bladder and bowel issues. Widely regarded as one of the most severe conditions compatible with life, open spina bifida can result in significant morbidity, with numerous body systems and tissues affected. In 2020, Shine surveyed its members with spina bifida. All adults over 25 were asked for their experiences of living with their condition, changes as they age, their health services, and how their needs are met by health services. Over 1000 responses were received. The results show that, although young people may be discharged from regular monitoring by health professionals at age 18, their health often deteriorates, mobility declines, pain increases, and emergency admissions for pressure ulcers, sepsis or UTI increase. Although spina bifida is a non-progressive condition, the impact of tethered cord, Chiari II, use of mobility aids, and the sequelae of insensate skin and immobility mount up. Numerous adults reported that many aspects of their health, ability, and quality of life declined from around the age of 35. Many stopped driving, others stopped working, anxiety and depression worsened, at an age many non-disabled adults regard as their prime. We can and must improve care for adults with spina bifida by planning proactive, integrated services from transition throughout adulthood. Shine asks you to consider how you can improve your services to do this.