Many parents worry that they may have caused their child to have brain damage or may fear that it is a condition that will recur in future children. In addressing those questions, it is important to remember that it is usually impossible to establish the reason a child has DCC.

Genetic testing may reveal a genetic abnormality or syndrome that is the underlying cause of the DCC. In these cases, the parents or the individual with DCC will want to consult a genetic counselor prior to becoming pregnant with another child. In the absence of an identified genetic abnormality, it is extremely difficult to find a specific cause of DCC. Multiple possible causes appear to exist, and genetic testing does not always reveal what that cause might be. If it is not genetic, it was caused by something that happened during the first trimester of pregnancy. While it is understandable that parents will want to know “why this happened,” in many cases they may never know. Therefore, it may be important to shift the focus from asking “why?” to asking, “what can we do to cope with the diagnosis?” and “how can we best help our child?”