I am sending this because some discussed not having children because of
their seizures and I saw it as related.
Family mental history shadows future children
Genetic fears weigh heavily on those grappling with choice to have kids
By Melissa Schorr
msnbc.com contributor
updated 9:02 a.m. CT, Mon., Sept . 28, 2009
Patrick Tracey watched helplessly as his two older sisters, mother and
grandmother were all felled by the brutal blow of schizophrenia.
"It hits like a comet, the impact is so devastating," says Tracey, who
spent his 20s fearing inheriting the disease himself, and later, watching
romantic relationships fizzle over his reluctance to pass that burden onto any
children.
"Even though I could still have children, I won't," says the 51-year-old
Boston-based author, whose book, "Stalking Irish Madness," traces the
roots of his family's mental illness to the same town in Ireland where a
genetic link to schizophrenia was first pinpointed. "The quest convinced me that
I'd be insane — pardon the pun — to have kids."
Mental health professionals have long known that certain mental illnesses
can run within families — and that history weighs heavily on some people
who are struggling to decide whether to have children and risk passing it on.
For most, the chance of developing schizophrenia or bipolar disorder is
only around 1 percent, but for those with a close relative with the disorder,
such as a parent or sibling, the average risk rises to about 10 percent.
Mental illness affects about 58 million people over the age of 18 in the
United States. About one in four adults suffer from disorders ranging from
depression to obsessive-compulsiv
year, according to the National Institute of Mental Health.
The genetic force behind these illnesses is strong — for an identical twin
who has developed schizophrenia, his or her twin has a 50 percent chance
to do so as well — but clearly not absolute.
"There is a risk, and the risk is real," says Holly Peay, a certified
genetic counselor and a project director at the National Coalition for Health
Professional Education in Genetics near Baltimore.
No test to predict mental illness
However, unlike some single-gene disorders such as cystic fibrosis or
Tay-Sachs, that can be tested for before conception and potentially avoided, or
during pregnancy, there is no testing for mental illness, which experts
say is likely a complex combination of multiple genes, plus environment
influences.
This leaves individuals with a family history of mental illness grappling
with an ethical conundrum: whether to take the risk of passing their
genetic vulnerability on to their unborn children.
Susan Marks, 52, whose two younger twin brothers were diagnosed with
schizophrenia in her 20s, wrestled over the issue with her husband.
"He said if it was going to happen, it was going to happen," said Marks,
a university fundraiser in Hudson, Ohio.
But she personally knew the ramifications of the chance they were taking. "
Unless you really live this disease, you don't know how horrible or cruel
it is," she says. "He never understood how devastating it would be."
The two ultimately decided to go ahead and have a daughter and a son, now
both young adults. "When you have this in your family and your kids turn
16, you are holding your breath a little bit. That's when the illness
manifests itself."
But so far, so good. "I keep hoping for the best."
'It never occurred to us'
Valerie Koeber, on the other hand, never expected the worst.
"It never occurred to us that we could have a child with mental problems,"
says Koeber, 66, a retired nurse in Wayne, Neb., whose mother and brother
suffered from bouts of depression and schizophrenia that left one
institutionalized and the other homeless in Las Vegas.
One of her two sons did end up battling addiction problems, anxiety and
clinical depression. Still, she has no regrets about choosing parenthood. "
Would I still have had him knowing what I know now? In an instant!" she says.
"He's a very loving person."
The decision is one that Bill Niehaus, 31, a clinical social worker in
Indianapolis, is currently struggling with in his current relationship. "It's
definitely something that weighs on me," says Niehaus, whose mother was
institutionalized for borderline personality disorder. "What if the same
thing awaits me? What if the same thing awaits the children I have yet to have?"
snip
Niehaus is not alone. A 2008 Psychological Medicine study by Australian
researchers at the University of New South Wales, found that 35 percent of
those surveyed with a strong family history of bipolar disorder reported
being "not at all" or "less willing" to have children as a result.
However, many may be overestimating the actual risk.
Half are mistaken about level of risk
A 2006 study in the American Journal of Medical Genetics found that nearly
half of people with a relative suffering from psychosis mistakenly
believed the risk their children would inherit the disease was much higher than it
actually was — and they were less likely to have children as a result.
"I do believe — strongly — that genetic counseling could be helpful for
this population," says study author Jehannine Austin, an assistant professor
of psychiatry at the University of British Columbia.
A psychiatric genetic counselor can help couples better get an accurate
calculation of their true risk.
"A lot of times people get reassurance," says Steve Keiles, a certified
genetic counselor at Ambry Genetics in Aliso Viejo, Calif., and president of
the National Society of Genetic Counselors. "They find out the risk is
actually not that bad."
No magic bullet to reduce risk
Some therapists question the notion that having an elevated risk of mental
illness should be a deterrent to parenthood, compared with having a family
history of a physical disease.
Sybil Keane, a clinical psychologist in Summit, N.J., has her clients
detail all the mental and physical disorders in their families. "What that does
is let them see that yes, we may be predisposed to illness — but does that
mean we would deny ourselves a child?"
However, because of the continuing stigma and burden of mental illness,
even a 5 to 10 percent risk may not be worth it for some.
Austin, who recently completed a study to be published next year, found
that mental illness was seen as more burdensome on the family than diabetes,
heart disease or cancer. "For some people, the severity of the illness and
the burden is such that they chose not to have children — even if they
perceive risk accurately."
snip
'I didn't know ... the train was coming'
In fact, those parents who do go into the role aware of the risks may be
better positioned to handle it, notes Rahil Briggs, a child psychologist at
Montefiore Medical Center in New York.
"You might argue that parents who are sensitized to the issue are going to
do even better, by keeping a really close eye on their child's emotional
well-being, and getting that child the earliest intervention when they see
warning signs," she says.
Rosemarie Turner, a clinical social worker at Family Centers Inc., a
social services agency based in Greenwich, Conn., just cautions these parents
not to scrutinize their children excessively.
snip
Melissa Schorr is a Boston-based freelancer who has written for the Wall
Street Journal, the Boston Globe Magazine, Reuters Health, Working Mother,
Self, GQ and People. She is the author of the young adult novel "Goy Crazy."
© 2009 msnbc.com. Reprints
URL: _http://www.msnbc.
In Christ,
Nedra 2 of 5,
Borg Mom Resistance is Futile in finding what works for my kids
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