Dear Wanting to Do the
Right Thing,
I can certainly understand why you might
be hesitant to talk with your young children about FAP. As
you said, you don't want to scare your children, and we all
know children who are terrified by the thought of going to
the doctor for a simple check-up. Also, some parents tell
me that they don't want their children to worry about a condition
that they may not have even inherited. In other words, these
parents wonder if they should just wait to discuss FAP until
after they have proceeded with genetic testing and have found
out whether or not any of their children have inherited the
condition.
In our center, we recommend that parents
begin discussing FAP with their children before obtaining
genetic testing for their children. We do not usually recommend
genetic testing for FAP until the age of 10, so it is probably
best to start talking about FAP with your children when they
are 7 or 8 years old (if they are not already aware of the
condition). At that age, they can understand basic information
about the condition and can also begin to grasp the concept
of inheritance. At the time of genetic testing, the genetic
counselor will spend a lot of time with the children discussing
FAP, how it is inherited, and how the genetic test works.
However, that can be a lot of information for a young child
to take in if he or she has never heard of the condition before.
It can also be intimidating to hear all of this information
for the first time from a "stranger."
From my experience, the children who have
coped best with genetic testing and colon examinations are
those who knew about FAP before they first came to our clinic.
You might want to consider talking to your children about
your operation since that is often one of the most frightening
aspects of FAP. Make sure that your child understands that
patients affected with FAP have surgery in order to ensure
that they stay healthy. The children may have heard family
members mention the word cancer. It is important for your
children to understand that not everyone who develops FAP
gets cancer. Also, talk to your children about your follow
up visits with your doctors and make sure that your children
understand the importance of these visits. If they see you
going for regular exams, they will probably be more likely
to follow through with their own exams when they are older.
Finally, if your children ask you difficult
questions that you cannot answer, be honest enough to say,
"I don't know." Perhaps your doctor, genetic counselor, or
other health care professional will be able to help you answer
your child's question. Good luck!
Jill D. Brensinger,
M.S., C.G.C., Genetic Counselor, The Hereditary Colorectal
Cancer Registry, The Johns Hopkins Hospital, Baltimore, Maryland
Resources for Talking to
your Child about FAP
Cold Spring Harbor Laboratory Press publishes
several books on genetics for children. Publications can be
ordered through their webpage at http://www.cshl.org or by
calling 1-800-843-4388. Here is a listing of some of the books
they publish.
Cells Are Us
Ages 5-8, Price $8.95
This book discusses the various type of cells that make up
the human body.
DNA Is Here to Stay
Ages 9-15, Price $8.95
This book explores DNA and how a single cell can grow into
a complete person.
Amazing Schemes Within Your Genes
Ages 9-15, Price $8.95
This book discuss how genes determine different physical features,
and also how genetic diseases such as cystic fibrosis can
be inherited.
