A sperm donor fathered 12 kids. They all show signs of autism
BARTLETT, Ill. - Danielle Rizzo's son is screaming. He is planted in the middle of the lobby of his elementary school, clinging to rainbow-colored blocks as she gently explains that she is here - off schedule, in the middle of the day - to take him to a doctor's appointment. But the first-grader is not listening.
"Happy Meal," he repeats over and over again. "Happy Meal!"
His little brother, who is also going to the appointment, is nearby, not moving. Rizzo is relieved that the two of them are not melting down at the same time, which happens all too often, and firmly guides them out the door.
Rizzo's children, ages 7 and 6, were at the center of one of the most ethically complex legal cases in the modern-day fertility industry. Three years ago, while researching treatment options for her sons, Rizzo says she made an extraordinary discovery: The boys are part of an autism cluster involving at least a dozen children scattered across the United States, Canada and Europe, all conceived with sperm from the same donor. Many of the children have secondary diagnoses of ADHD, dyslexia, mood disorders, epilepsy and other developmental and learning disabilities.
The phenomenon is believed to be unprecedented and has attracted the attention of some of the world's foremost experts in the genetics of autism, who have been gathering blood and spit samples from the families.
Autism, which affects an estimated 1 of 59 children in the United States, is a "spectrum disorder" characterized by difficulties navigating social situations and restricted or repetitive behavior. Some people who have it never speak and need daily care, while others, like actress Darryl Hannah and Pokémon creator Satoshi Tajiri, are highly successful in their fields. In recent years a growing movement has been challenging the notion that autism is a disorder at all. Rather, advocates argue, it's a difference that should be celebrated as adding diversity to human communities.
Rizzo hopes her children will cope better as they grow older, but for now, she knows they are suffering.
When she first found out about their many half-siblings, she consulted a genetic counselor, who she says told her the odds of so many blood-related children with autism occurring spontaneously was akin to all the mothers "opening up a dictionary and pointing to the same letter of the same word on the same page at the same time."
"It was the donor," Rizzo remembered thinking. "It had to be."
A quick online search for the donor's profile showed that sperm from a man matching his description was still being sold by at least four companies. She called them all, asking for information about his medical history - and to inform them of the autism cluster - but she says the representatives she reached told her she didn't have any "evidence" that his sperm was responsible for the autism cases.
She turned to health-care regulators in New York and California, where the sperm banks were based. The response, Rizzo said, was that cases like hers are not part of their responsibility. (A spokeswoman for New York State said her department had no record of Rizzo's complaint but urged her "to reach out." A California spokesperson said the state would consider investigating her case as an "adverse event" related to a sperm bank.)
The Food and Drug Administration told her its oversight of the sperm-donor industry is limited to screening for sexually transmitted diseases.
So, after a year of fruitless phone calls and letters, she sued.
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Rizzo turned to a sperm bank when she was 27 years old and a business banker at a JPMorgan Chase branch. She and her partner, who asked that her name not be used to protect her privacy, had been together for eight years. They met while Rizzo was attending community college on a softball scholarship. Rizzo was the team's pitcher; her partner was an assistant coach. In June 2011, when Illinois began issuing civil union licenses to same-sex couples, they were the first in line at the Kane County courthouse.
Rizzo says they were eager to start their family and decided that Rizzo, younger by two years, would carry the baby. For months, the couple scoured online profiles to find just the right sperm donor.
Donor H898 from Idant Laboratories looked like a winner.
He was blond and blue-eyed, 6-foot-1, 240 pounds, and appeared to be smart and accomplished. His profile said he had a master's degree and was working as a medical photographer. His hobbies included long-distance running, reading and art.
And most important, Rizzo says, he had a clean bill of health, according to his profile - having scribbled "NA" and a strikethrough line on all but one of the more than 100 medical questions, including mental health ones, posed by sperm banks. (His paternal grandfather had had prostate cancer at age 85.)