Orchid offers advanced genetic testing for couples who want their child to have the best shot of a healthy life. “Patient and Family Stories” is where we highlight families who have been impacted by chronic conditions Orchid screens for and their perspectives on genetic screening.
“The weekend someone stole my child from me”
Growing up, Zac was an “unusually healthy child.” He had no childhood illnesses and would scarcely get colds, played baseball, drums, and the piano, and was never disciplined by his mom so much as sending him to his room. “He was like a little clock, almost like a storybook kid,” reflects Laura.
Not until the weekend of 2008 as Zac left his mom 20 messages about the voices coming from his phone and smoke detectors, leading him to want to burn his phone and the house down, did Laura realize her son was spiraling into an inexplicable health crisis.
Laura was away on a business trip and flew right home after hearing her son’s delusional messages. What she came back to was devastating: the house was wrapped in plastic wrap and paper towels; he had a rag around his face and stuffed his ears with Kleenex to prevent himself from being contaminated by other people. “He’d been urinating in the bathtub and had the same filthy clothes on. It was clear that he hadn’t slept since I left. He looked like a drunken 40-year-old. I just couldn’t believe what I saw.”
“That was the weekend that someone stole my child and replaced him with the movie version of Howard Hughes in The Aviator.”
From there, Zac would be seen by many doctors and psychiatrists, going in and out of psychosis. He was hospitalized for more than nine months of his first 18 months of illness, took 28 pills a day with little to no avail, and even got arrested “a couple of times.” His family tried to get him through high school and college, but he kept needing to be hospitalized for six weeks to two months at a time. Laura called the experience a “hopeless, terrible, difficult journey. Finding stability was hard-won for him. And it was fleeting — it would be gone with just a single incident.”
Desperate for anything to relieve her son’s suffering, Laura tried “shoving 100 supplements a day down his throat”, taking him to massages when his body was catatonic and practiced clean living to remove any environmental toxins. Zac continued to decline. She came to realize that in some cases of psychotic disorders like schizophrenia, the brain doesn’t just simply “repair itself.”
Becoming a “sick family” embedded in a life of chaos
Zac was not the only family member impacted by the life of chaos schizophrenia created. In the same way any family struggles after a loved one becomes drastically ill, Laura’s family relationships changed. Laura’s older daughter Leah was “put on the backburner overnight.”
Leah, 36, now has three young children of her own. She’s a director of a creative group in an advertising firm and runs a hard cider family business with her husband. “She has a lot of responsibility and is brilliant,” beamed Laura.
But before Leah had kids, Laura remembers that when they watched a documentary together about a baby being diagnosed with schizophrenia, Leah turned to her mom and said, “now I’m terrified of having a child. What if something happens?”
Perspectives on genetic screening for future families
A doctor once told Laura that you’re only as happy as your least happy child.
Looking back, Laura feels conflicted about parenthood given the misery she witnessed Zac go through: “if I had known that I was bringing a child into this world who would suffer so badly, I would not have had children. It sounds horrible to say, but when you’re so connected to your children, their suffering becomes your suffering.”
When talking about the future opportunity for prospective parents to see how their genetics can impact their future child’s health, Laura believes that knowledge is power: “every child is a roll of the genetic dice. The more you know, the better job you can do as a parent. Understanding your genetic makeup is part of that.”
In the same way there’s genetic screening for Tay Sachs or chromosomal disorders, Laura supports screening for schizophrenia. Parents can choose what they want to do with that information. That might include being more prepared so as not to be “blindsided” by the unexpected or opting to do follow-up embryo screening if desired. “I don’t believe in creating perfect babies. But educating yourself on what potential illnesses your child could have, and deciding what to do based on that, is most certainly worthwhile,” Laura stated.
Finding meaning from suffering and loss
Six years later from Zac’s death, Laura is devoted to providing support and resources to families impacted by schizophrenia “to feel a little less horrible about the entire thing that my son went through.” She’s also attended conferences on mental illness, showing her humility about how much she didn’t know about her son’s illness.
Now and then, Laura hears news about someone with schizophrenia getting shot by the police or freezing to death on a subway and thinks, “It’s a comfort to know that Zac is not here for that. Schizophrenia is really hard — I know people who are millionaires and couldn’t save their child. No amount of money can ‘beat it.’”