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.