Spina Bifida

A low sacral lesion often means walking with minimal support. A high lumbar or thoracic lesion usually means wheelchair mobility for community distances, with standing and short-distance walking as separate goals. Being honest about this early lets a family plan rather than chase an outcome that was never available.

What matters day to day is independence — transfers, dressing, toileting, getting to school — and those goals are achievable across the whole range of lesion levels.

Skin. Sensation is absent below the lesion, and pressure injuries develop silently. Skin checks, seating and orthotic fit are part of the programme rather than separate advice.

Bladder and bowel. Continence management protects the kidneys and determines whether a child can attend school comfortably. It is planned with urology and it is not a secondary concern.

Latex. Latex allergy is markedly more common in this group, and equipment and gloves are checked accordingly.

Strengthening what is innervated, maintaining range in joints at risk of contracture, standing and supported gait work where appropriate, seating and wheelchair skills, and occupational therapy for the tasks of the child's actual day.

Hydrotherapy is valuable because water reduces joint loading and allows movement that is not possible on land — provided skin is intact and there is no open wound.

Skin over insensate areas, because pressure injuries develop unnoticed. Bladder function, because reflux damages kidneys silently. And shunt function where a shunt is present.

These determine long-term health more than mobility does, and families are trained in all three because the signs appear between appointments rather than during them.

The risk is higher after an affected pregnancy, and it can be reduced 2. In a landmark randomised trial at 33 centres in seven countries, 1,817 women who had had a pregnancy affected by a neural tube defect — the group of birth defects that includes spina bifida — were given folic acid, other vitamins, both or neither; folic acid reduced the risk of recurrence by 72% 2. The other vitamins in the trial showed no significant protective effect 2.

A Cochrane review of five trials, with 6,708 births, rated the evidence that folic acid prevents neural tube defects as high quality and found a clear protective effect against recurrence 3. The trials gave it around the time of conception, which is why it is started before trying to conceive rather than once a pregnancy is confirmed 2 3. The landmark trial found no harm from folic acid, although its ability to detect rare side effects was limited 2. Women who have had an affected pregnancy should agree the dose and timing with their doctor before trying to conceive.