The exploration of possible etiologies (causes) for the
congenital heart disease (CHD) affecting a family begins with
the gathering of all available relevant information. This
information usually includes:
For the person affected by CHD:
-
Non-cardiac physical symptoms experienced by the person with CHD
-
Developmental or cognitive challenges for this person
-
Social or psychological difficulties for this person
-
Pregnancy and birth experience for the mother of the person with
CHD
For other family members:
When trying to understand whether a family is at increased risk
for recurrent CHD, information on other family members
experience is valuable. This might include information on:
-
Medical, developmental, or psychological symptoms diagnosed in
other family members
-
Family members’ experience with pregnancy, pregnancy problems,
miscarriage, and infertility
-
Stillbirth, infant death, premature death, and sudden death for
family members
How complete does it need to be?
It is important to note that none of us knows or has access to
complete family history information. Some families have little
or no access to information. In some families, people remember
experiences or diagnoses differently. Each family works with
the information available to them. However, many families
discover that, often, there are one or more members who are the
unofficial historian(s) of the family. This historian can often
assist in tracking down information.
Helpful Tools:
Several tools have been developed and are available on-line to
help families get started with gathering medical histories:
