Advice from parents: spina bifida & clubfoot

Hi everyone,

My daughter is 5 years old. She had spina bifida at birth and underwent spinal surgery (untethering) a few months ago. She is otherwise healthy. She developed a left foot deformity (clubfoot/foot drop) about a year ago and currently uses an AFO.

The AFO has become tricky, as she’s developing a pressure sore on her heel and a pressure point on the left side of her foot — likely because she walks on the top of her foot.

I’d love advice from parents who have faced something similar: • Have your children had corrective foot surgery at this age? • Should it be soft-tissue/tendon release or bony surgery at 5 years? • How serious or risky is the surgery? • What can we realistically expect after surgery in terms of walking and braces? • Any tips on preventing sores with AFOs in the meantime?

Thanks so much for your experiences and guidance!