Newly Diagnosed?  Diagnosed Prenatally?

This is not uncommon.  Up to 40% of patients are diagnosed prenatally. Most, if not all parents are completely unprepared for the diagnosis.  There is often shock and disbelief.  Initial grief can be overwhelming. Prenatal diagnosis (before the baby is born), is not uncommon.  Sometimes families experience long and frustrating delays before a correct diagnosis is given; diagnosis is followed by a need to understand the disease.  Harboring fear and fearing the unknown future is not uncommon. Sometimes parents must turn their attention to complex medical situations.  All this places extra demands on time, energy, and money, while managing feelings of despair, fatigue, inadequacy, and fear.

For infants who survive the newborn period (first 3 months of life), it may be difficult to understand and accept the abnormalities lurking inside, our children look healthy!  As we learn to accept the diagnosis and circumstances, we often experience roller coaster emotions, and cope by using denial, sadness, humor or anger.  Recognize these are natural responses to grief, and that men often grieve differently then women.

To maintain a healthy and realistic attitude, ease fear, isolation, alleviate powerlessness and hopelessness... Educate yourself.  Education may be your key to coping. Become knowledgeable.  Read.  Learn as much as you can, chances are you and your doctor will be learning together.  Knowledge can be powerful, it diminishes fear, and an informed parent is a prepared parent.  Increase your sense of control; find out everything you can about your child’s disease.

Fatal Diagnosis? Have Hope
There are many newborn testimonials of ARPKD families being offered a poor diagnosis or little hope.  Many times this includes - "there is little to no hope for survival" simply because the medical team knows little about the disease.. Sometimes this is the outcome, but many times not.  We have hundreds of children walking around today who were initally given little chance for survival.  Sometimes this is the outcome, up to 30-50% die at birth or soon afterward, yet no one can predict the outcome with 100% certainty.