Carrying to Term After a Fatal Diagnosis

There are many testimonials of ARPKD families being offered antiquated and obsolete information pertaining to Infantile Polycystic Kidney Disease or more accurately described as Autosomal Recessive Polycystic Kidney Disease.  Many times this includes - "there is little to no hope for survival".  Sometimes this is the outcome ("what we wish we had known"), though sometimes it is not ("newborn testimonials").  Unfortunately, doctors cannot predict with accuracy how this disease will affect your baby.  ARPKD affects each baby differently.  No two cases are alike, even in the same family.

For the 30-50% who die at birth or soon afterward, we hope these sites will help you through the outcome.