Spina bifida

The spine not forming completely before birth. The bladder and bowel matter more than the walking.

What it is

Spina bifida happens when the spine and spinal cord do not form completely in the first weeks of pregnancy, before most people know they are pregnant. That is why folic acid before conception, and the fortification of flour introduced in the UK in 2021, matter so much.

There are several forms. Spina bifida occulta is common and usually causes nothing. Myelomeningocele is the serious form, where the spinal cord is exposed, and it usually causes some paralysis below the level of the lesion.

Most people with myelomeningocele also have hydrocephalus and need a shunt.

The thing families are least prepared for is that mobility is not the main issue. Bladder and bowel management is.

Signs you might notice

The diagnosis is usually made before or at birth, so recognition is about complications.

Shunt malfunction: headache, vomiting, drowsiness, visual or personality change. An emergency.

Tethered cord: new weakness, changed walking, new back or leg pain, or a change in bladder function. It needs urgent neurosurgical assessment.

Pressure damage on insensate skin, which develops without pain to warn.

Urinary infections, and kidney damage from a bladder that does not empty.

Latex allergy, which is far commoner in this group and needs flagging everywhere.

How it can affect day-to-day life

Kidney failure used to be the main cause of death in spina bifida, and modern bladder management is why it no longer is. Clean intermittent catheterisation and regular renal monitoring are the treatment, and they are lifelong.

Bowel management takes real daily time and is what most affects whether somebody can go to school, work or stay over with friends.

Skin checks matter for the same reason they do in spinal cord injury: no sensation means no warning.

Learning profiles are often uneven, with good verbal skills and weaker organisation and maths, and that gets misread as not trying.

Supporting someone well

Protect the kidneys: follow the catheterisation regime exactly, attend the renal scans, and treat infections promptly.

Establish a bowel routine at the same time daily and stick to it. Consistency is what makes it work.

Check insensate skin every day, including under braces and in the wheelchair.

Flag latex allergy on every record, at every appointment, before every procedure.

Watch for tethered cord signs during growth spurts and report any change in walking or bladder function.

Support independence with self-catheterisation early, because it is the skill that determines school trips, sleepovers and later independence.

Fiducia Guardian holds the catheter and bowel regimes, the shunt details, the allergy alert and the whole team in one record, which is what a school, a respite service and an emergency department each need.

Where to get help

Shine provide specialist advice for spina bifida and hydrocephalus across the UK.

Ask for a specialist urology and continence team, and for annual renal monitoring.

Suspected shunt malfunction or new tethered cord symptoms are urgent.