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-compulsive disorder to schizophrenia in a given 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.
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“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?”
“Working in mental health, I feel like I should be trained well enough to handle it,” he adds. “But knowing the emotional toll, I feel really pained to have my significant other go through that.
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 mental health expert on justanswer.com and 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.”
What also makes the decision especially tough, genetic counselor Peay says, is there’s very little that even a stable, unaffected parent can do to reduce their child’s likelihood of getting sick. “It’s not like we have a magic bullet to reduce the risk,” she says. “That’s a tough message for parents to hear.”
However, Marks, the Ohio woman with two young adult children, was determined to influence what little was within her control.
“It very much affected how I parent,” she explains. “I became very laid-back. I never wanted to put pressure on my kids to get all A’s or [play] team sports, because I’ve read that stress plays a role.”
She also made sure to get vaccinated during pregnancy to avoid the flu, and lectured her son about avoiding marijuana. Both, she had learned from her research, increased risk factors for developing schizophrenia for those already vulnerable.
'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.
“I worry that would impact how you raise the child,” she says. “You’re very reactive at any sign of illness. As a therapist you’d have to help that couple not see that child as carrying this mental illness and always wondering when is it going to come out.”
Tracey, who is a bachelor, says his choice to remain childless is still tinged with regret.
“It’s a gut — and often gut-wrenching — decision,” he says. “With my sister, I didn’t know we were playing on the tracks and the train was coming. If I had my own child, I’d know the train was coming and I’d have to watch her tied to the tracks, unable to do something.”
“To have a little girl, look into her beautiful eyes, and think every day that I might lose her, might be too much to bear.”
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."
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