Discussing Klinefelter Syndrome
Discussing Klinefelter syndrome with friends or family members can be a difficult thing. Even more difficult is discussing Klinefelter syndrome with your child. The choice of when you do this, and the manner in which you do this, are personal decisions. Some experts favor telling the child early in life; others favor waiting until he is older.
Expectant parents awaiting the arrival of a baby with Klinefelter syndrome have difficult choices to make: whom to tell and how much to tell about their son's extra chromosome. Fortunately, however, there are some guidelines that new parents can take into account when making their decisions.
One school of thought holds that the best course is to go slowly, waiting at least a year before telling anyone (grandparents included) about the child's extra chromosome. Many people are frightened by the Klinefelter syndrome diagnosis, and their fears will color their perceptions of the child. For example, some people may confuse the term Klinefelter syndrome with Down syndrome, a condition resulting in mild to moderate mental retardation.
Others may prefer to reveal the diagnosis early. Some parents have found that grandparents, aunts, uncles, and other members of the extended family are more supportive when given accurate information.
Another important decision parents must make is when to tell their son about his Klinefelter syndrome diagnosis. Some experts recommend telling the child early. When the truth is withheld, children often suspect that their parents are hiding something and may imagine a condition that is worse than their actual diagnosis.