Transition to adulthood
Although many childrens hospitals feature integrated multidisciplinary teams to coordinate healthcare of youth with spina bifida, the transition to adult healthcare can be difficult because the above healthcare professionals operate independently of each other, requiring separate appointments, and communicate among each other much less frequently. Healthcare professionals working with adults may also be less knowledgeable about spina bifida because it is considered a childhood chronic health condition. Due to the potential difficulties of the transition, adolescents with spina bifida and their families are encouraged to begin to prepare for the transition around ages 14–16, although this may vary depending on the adolescents cognitive and physical abilities and available family support. The transition itself should be gradual and flexible. The adolescents multidisciplinary treatment team may aid in the process by preparing comprehensive, up-to-date documents detailing the adolescents medical care, including information about medications, surgery, therapies, and recommendations. A transition plan and aid in identifying adult healthcare professionals are also helpful to include in the transition process.Further complicating the transition process is the tendency for youths with spina bifida to be delayed in the development of autonomy, with boys particularly at risk for slower development of independence. An increased dependence on others (in particular family members) may interfere with the adolescents self-management of health-related tasks, such as catheterization, bowel management, and taking medications.
Spina bifida (Latin for split spine; SB) is a birth defect in which there is incomplete closing of the spine and the membranes around the spinal cord during early development in pregnancy. There are three main types: spina bifida occulta, meningocele and myelomeningocele. Meningocele and myelomeningocele may be grouped as spina bifida cystica. The most common location is the lower back, but in rare cases it may be in the middle back or neck.Occulta has no or only mild signs, which may include a hairy patch, dimple, dark spot or swelling on the back at the site of the gap in the spine. Meningocele typically causes mild problems, with a sac of fluid present at the gap in the spine. Myelomeningocele, also known as open spina bifida, is the most severe form. Problems associated with this form include poor ability to walk, impaired bladder or bowel control, accumulation of fluid in the brain (hydrocephalus), a tethered spinal cord and latex allergy. Learning problems are relatively uncommon.Spina bifida is believed to be due to a combination of genetic and environmental factors. After having one child with the condition, or if one of the parents has the condition, there is a 4% chance that the next child will also be affected. Not having enough folate (vitamin B9) in the diet before and during pregnancy also plays a significant role. Other risk factors include certain antiseizure medications, obesity and poorly controlled diabetes. Diagnosis may occur either before or after a child is born.