What are the obligations and the rights of parents of a profoundly disabled newborn?
Parents of these newborns need to be properly informed as to the seriousness of their baby’s condition and provided with the range of treatment options. They should be advised of the intensity of care that is available to provide for the optimal support of life. Parents should be made aware of the availability of hospice care to support them if the baby has an incurable condition that may proved fatal, or even the possibility of being life threatening. Parents should be informed about all possible resources that are available: people, organizations, specialists in the condition, counseling of emotional and spiritual, genetic if indicated. The parents and baby should be treated with dignity and respect no matter how long the life or how impaired the baby is. They should have the option of going home with their baby if time is short and have support for the siblings and for other relatives if they are grieving and having difficulty accepting the condition.
