What it is
It is usually found at the 20-week pregnancy scan. Some babies have surgery to close the gap in the spine before or soon after birth.
Lifelong care from a team of specialists may be needed, including physiotherapy, help with bladder and bowel, and treatment for hydrocephalus.
Common signs
- A gap or sac on the baby's back
- Weakness or loss of feeling in the legs
- Bladder and bowel problems
- Fluid on the brain (hydrocephalus)
- Learning difficulties in some people
How it is usually diagnosed
- Ultrasound scan in pregnancy
- Blood test in pregnancy
- Examination and scans after birth
Records worth keeping
Keeping these together makes each appointment easier, especially when you see a new doctor:
- Pregnancy scan reports
- Surgery notes
- Neurosurgery, urology and orthopaedic letters
- Therapy and care plans
Questions to ask your doctor
- How will the condition affect our child?
- Which specialists will be involved?
- What should we do in a future pregnancy?
When to get help right away
Call 112 or go to the nearest emergency department if you have:
- Headache, vomiting, drowsiness or a swollen soft spot in someone with a shunt: call 112
This page is general information. It is not a diagnosis and does not replace a doctor who knows your history. Medfold keeps your records organised; it does not interpret them.