End "Incompatible with life"; a judgement call not a diagnosis.

As a parent of a child who was diagnosed with Anencephaly, which is said to be “Incompatible with life”, I am reaching out to you, ask for your support to change the definition which tears down any hope and gives a grim picture of what the future holds. The term "incompatible with life” is a judgement call made by health care professionals based on the diagnosis of having one of the many conditions that are life limiting. Families are told their children will pass away prior to, during or shortly after birth. Many children with life limiting conditions are thriving in some instances for weeks, months and even years. I do not feel that this label should be used if the infants do not have similar outcomes expected. Families would rather have a full disclosure of possible outcomes.