What is Spina Bifida?
Spina bifida is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord. There are three main types: spina bifida occulta, meningocele, and myelomeningocele (MM).
What causes spina bifida?
What problems can my child have?
- Weakness or paralysis of the legs
- Loss of feeling in the legs or lower half of the body
- Problems with the feet, knees, hips, legs, or spine
- Problems controlling the bladder or bowel
- Problems with learning, attention, or memory
Many children with spina bifida have hydrocephalus which is the abnormal build-up of fluid in the brain caused by blockage. This is very common in spina bifida and is often treated by a neurosurgeon who places a drainage tube called a shunt.
What bladder and bowel problems will my child have and why?
Are there different levels of severity?
How is spina bifida treated?
- Treatment for spina bifida is life-long.
- The spine defect is closed in the first few days of life. If a shunt is needed for associated hydrocephalus this is reformed by the neurosurgeon.
- Every child with spina bifida is different depending on where the spine defect occurs, and so treatment is carefully customised for each child.
- Therapy may be provided for a limited time to help the child move better and learn important skills. Both physiotherapy and occupational therapy can be important especially early on in diagnosis and through life to monitor your child and help them become as independent as possible. Therapy may help some children get stronger and learn to walk better and become more independent with everyday functional tasks.
- Crutches, walkers and leg braces (orthotics) may be needed to help with walking. The ability to walk is based on the nerves that were affected by the spinal defect that occurred before birth. Some children require a wheelchair. Your physiotherapist and doctors can assess and advise what your child requires.
A tube called a catheter may be recommended to help empty the bladder. This helps prevent infections and kidney damage. Your child is likely to be seen regular by the specialist urology and nephrology teams.
Surgery may be needed to fix problems with your child’s spine or legs. Your child will need to be seen regular by the orthopaedic team.
Testing for learning problems may be advised. Some children with MM have learning needs others aren’t affected. It is important to ensure your child is assessed if required.
Who is likely to be involved in my child’s ongoing management?
This is not a full list and will vary depending on your local spina bifida service:
Neurologist or Consultant paediatrician in neurodisability
Doctors and clinical nurse specialist (urology, nephrology)
Educational Psychologist and SENCO’s
We can assess and treat children at your home, school, gym or anywhere you feel your child would be most comfortable. Contact us for an informal chat to ask any questions specific to your child. We have children’s physiotherapists who are specialists working with children with Spina Bifida within Surrey, Sussex, Kent, Hampshire and parts of London.