Up to 40% of patients with Autosomal Recessive Polycystic Kidney Disease are diagnosed prenatally (before the baby is born). Most, if not all parents are completely unprepared for the diagnosis; there is often shock and disbelief and initial grief can be overwhelming. Sometimes families experience long and frustrating delays before a correct diagnosis is given. Diagnosis is followed by a need to understand the disease. 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 of the unknown.
For infants who survive the newborn period (first 3 months of life) it may be difficult to understand and accept the abnormalities in our often healthy looking infants and children! 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 very 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 since this is a rare condition. 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.