What Is The Life Expectancy For A Child With Level IV Caudal Regression Syndrome?

Can someone please tell me what the life expectancy is for a child with LEVEL IV (Highest Level) Caudal Regression Syndrome? I have always assumed there wasn t one but an expert consultant has now said otherwise. My son has bowel and bladder incontinence and his spine stops at L1. Researching it has shown mixed reviews.