In many cases, our infants are labeled and given up on before they are even born.
As a parent of a child with anencephaly, I know very well the pain of being faced with a diagnosis that my infant was “incompatible with life.” The terminology used in the diagnosis of our child was very bleak and did not lead to any hope of survival past birth.
We were given the darkest outcome possible without any consideration for severity of the condition. We were advised of our options to terminate. However, the label given already suggested that it was a death sentence either way. “Incompatibility with life” is a judgment call that a doctor will make based on the condition. However, most families are not provided with all the information to make an informed decision concerning that judgment.
Often, full rational for their diagnosis is not provided, and families are ultimately blinded with believing what a health professional deems as a final judgement. Judgment calls are not what our children need to be labeled with. They need to have a clear and measurable diagnosis. Whether a condition is mild, moderate or severe, it will greatly impact the outcomes that can be expected. Our goal is to end judgment calls and have a more clear explanation of a diagnosis.
End Incompatibility with Life. Our goal is to change the outdated definition that blanket labels our children “incompatible with life.”
Studies have shown that parents dislike the terminology, and it does not give them the full disclosure of the outcomes possible with their children. The terminology leaves families with a sense of loss even before the child has passed away.
We have found that, in some instances, there are children who survive weeks, months and years with the label “incompatible with life.” To label a child who survives long-term or who has passed away before, during or after birth the same is not accurate and should not be used if you do not have the similar outcomes in every case.
Our website brings support and desire for change in a term that is not acceptable to parents, family members and friends of these little fragile lives. We are asking for a change of terminology, and we understand that this will not change the possible outcomes for our infants.