10%... this is very rough as it depends on so many factors... If there
are other family members, like an aunt in your case, the risk is a bit
higher…
AN: Oh, only that?
GC: These are the most recent data that we have, but each individual sees
this percent in a personal way. Does it sound like a small risk to you?
AN: Yes! I can’t believe this… My life could have been different if only I
knew this… Are you sure? Such a small risk… I wouldn’t have got and
if only I had known…
Intervention
Patients’ needs and questions very much dictate the level of depth we go into.
Some patients may have questions about potential risks for their chidren while
others do not want to go into too much details regarding numbers as family
planning is not dependant on that or has already been completed and prefer to focus
on other aspects such as what caused schizhophrenia in their case, how their life has
been and what helps them now or might be helpful in the future.
GC: Please tell me more about what happened back then, if that’s all right
with you
AN: Well, it was such a long time ago, twenty something years, but I will
never forget that day. There was this old doctor who asked “are you
A. Ionescu, R. Moldovan
Cognition, Brain, Behavior. An Interdisciplinary Journal
19 (2015) 165-177
173
sure you want to give birth to someone with schizophrenia?” I will
never forget that day. I cried for days, thinking about the monster that
I am…
GC: This must have been so difficult for you… but the fact that you are
here right now tells me how strong you have been all along.
AN: I may be strong now, but I wasn’t then. The next day, after my
psychiatric appointment I mean, I went and scheduled the termination
of pregnancy… There was another doctor there and he saw me crying
and said I shouldn’t rush into anything I might regret later and
encouraged me, and said that maybe the child won’t have
schizophrenia like me and maybe I should keep it… but I was too
scared, too ashamed. I was already affected at the time and I was so
confused and upset and had no idea what to do.
GC: What about your family… What did your husband say? How did your
family see all this?
AN: I was already having difficulties with my husband… and his family
wasn’t very supportive of our relationship given my condition… There
weren’t pretty times
AN: I never really wanted to terminate that pregnancy, I really didn’t want
that and I am so sorry, I have always felt sorry about that decision…
My twin sister has a daughter who is healthy… I love to look at her.
But it is too late for me to have kids and anyway it is very difficult
when you have to live with schizophrenia… I can’t trust anyone really,
not even myself sometimes. It was not a walk in the park, I can tell you
that. But it’s over now
GC: What helped you most, all this time?
AN: My family, my mother and my sister.
GC: You are very lucky to have them…
Dealing with shame and guilt issues is very common in genetic
counselling, particularly when seeing families with psychiatric disorders; there are,