Chapter Six continued...
So we took her for a checkup at our provincial hospital, and they diagnosed nerve deafness. When we got the result, my husband and I were stunned. We seemed to fall into a bottomless chasm. Now we are always anxious, we can't put our minds to anything. Her grandparents are also worried and depressed. The happy laughter of the early days has gone.
Parents were often bewildered because they could see no reason why their child should be deaf. They often seemed not to understand how genetic deafness can be transmitted:
We felt greatly distressed. We had some doubts about the test result, because it seemed there were no possible causes for my daughter's deafness at all. During her pregnancy, my wife was very cautious and there is no hereditary factor.
Often "the whole family"—grandparents, parents' siblings, and other members of the extended family—is described as sharing the parents' grief and frustration:
[My sister and brother-in-law] cry all day long and don't even want to eat or drink. Our whole family feels greatly distressed, but we don't know what to do.
Thus in addition to the shock of the diagnosis, bewilderment at the seemingly inexplicable misfortune, and the anxiety, worry, and depression experienced by the entire family in coming to terms with the knowledge of the child's deafness, parents record the added distress of uncertainty about what action can be taken. None of the families mentioned any previous experience of deafness; in the absence of a professional support system, parents had to devise their own strategies and courses of action for dealing with a completely unfamiliar situation.