The Children of Donor X
At first, registering on the DSR felt "like jumping off a bridge," the mother says. Her kids would never wonder on their own where their father is. What would they make of all these half-siblings, when they were old enough to understand? And yet, once she knew the DSR was out there, the pull was irresistible. Last spring, after initial contact over e-mail, she and her husband conquered their fears and met up with Theresa and her kids when they came to Florida to go to Disney World. The families got together in a park, and as Gwenyth and Theresa had, the three adults marveled at the kids' similarities. Anna and one of the twin boys mirrored each other's facial expressions. They broke the crust off their sandwiches with the same precise gesture. And when they squinted in the sun they looked as if they could be twins.
So far, the DSR has connected seven families who used Donor X. They live in five states and have 11 children, two of them girls, nine of them boys (with one more on the way). The odds that three of these kids would fall on the autistic spectrum is about 45 times higher than the chances for the general population.
Gaps in medical knowledge because of unknown genetic history are always a concern, but when a child has health or developmental problems, the issue feels especially pressing. Among the Donor X families, the reports of autism have drawn some of the parents closer—affecting even those not directly touched by it. For the married couple, seeing how much the others were getting from these relationships has strengthened their intention to tell their own sons when they are older that they were conceived with donor sperm—and also, as it happens, donor eggs. "I don't want to mislead them or have them make medical decisions based on faulty information," the father says.
For other parents, the sharing of medical data has already had real meaning. Victoria Boyd conceived a son named Victor with Donor X. When he was about 2, he had a speech delay and significant trouble chewing and swallowing food. Now at 4, the problems have mostly resolved, thanks to early intervention. But Victoria has been grateful to know about Dylan and Joseph, because the information has given her more to go on. "These are his blood siblings, so that was important," she says.
This is familiar terrain for the DSR's Wendy Kramer. "I wanted to respond to our members' stories about struggling to get medical history that the banks won't give them," Kramer says. And so she recently added a new option to the registry. It's a page designed to collect all relevant genetic and medical information that families who used the same donor wish to share among themselves. The donor can also post, anonymously if he chooses. "I wanted to create a safe place where the donor can let the families know if his father dies of a heart attack, or other medically important facts," Kramer says.
Is the bank that sold Donor X's sperm at fault for failing to catch the genetic defect he appears to carry? (None of the mothers of affected children has family members with autism.) No history of the disorder showed up on the three-generation medical profile that Donor X filled out for the California Cryobank. The bank conducts DNA testing for conditions like Tay-Sachs, cystic fibrosis, and sickle-cell anemia, which are primarily caused by a single mutant gene. Autism is a different story. The disorder clearly has a hereditary component (if one identical twin has it, the odds the other will, too, are between 60 and 90 percent), "but there is not a genetic test for autism because we have not yet identified enough genes that might cause it," says Peter Szatmari, MD, a veteran autism researcher and psychiatry professor at McMaster University in Hamilton, Ontario.