The Legacy of Donor 1047

Originally appeared in The Star Tribune, August 21, 2005

Kay Miller, Star Tribune

Now that his curls have been cut, Teddy Persson, 2½, looks more like his older brother. Zach Forsberg, 14, towers over his mother and dark fuzz covers his upper lip. Zoe Forsberg, 12, has grown so much that the halter of this summer's swimsuit pulls at her neck.

Sherry Forsberg and Beth Ager could be mothers at any swimming pool in Minnesota comparing notes on their growing kids -- except for two facts: The same man fathered their three children. And neither woman has ever met him.

"Every once in a while I have to sit back and laugh at the brave new world we're in," said Ager, who lives in Chetek, Wis., 360 miles from Forsberg's home in Luverne, Minn. "Just the idea that my son was conceived by an egg that matured in 2002 and sperm that had been donated in 1992, exactly 10 years before."

Both women used sperm from Donor 1047 purchased from Cryogenic Laboratories Inc. (CLI) in Roseville. CLI and its parent company, Genetics & IVF Institute in Fairfax, Va., constitute one of the largest sperm banks in the world.

The two women met online two years ago on a website devoted to helping donor-conceived children make contact with biological half-siblings and donors. From sketchy profiles they know that Donor 1047 had brown eyes, brown hair, dimples, German-Norwegian heritage, top chemistry grades and a passion for baseball, jazz and talk radio.

"I have found it very difficult to get questions answered," Ager said. "I may sound like I'm complaining, but I think they [CLI personnel] are standing by their principles. I appreciate that because, hey, I don't want anybody coming looking for me unless I say they can. However, I'm really curious about those other kids out there."

Their questions echo a growing national debate over sperm donation -- nagging ethical issues that play out every day on the www.donorsiblingregistry.com website: Whether, when and how to tell children. The anger of young adults who learned accidentally. Couples seeking to buy vials of "retired" donors' sperm. Wrangling over donor privacy vs. a child's right to know.

For most of the 1 million American children conceived with donor sperm, secrecy remains the name of the game, said Wendy Kramer, the Denver woman who started the website in 2000. She estimates that only 10 percent of donor-conceived children know the specifics of their origin.

"In the next 10 years I see this wave of donor-conceived children cresting at adolescence or young adulthood and I think they're going to start demanding change," Kramer said. "It's their right as human beings to know their genetic heritage."

After hundreds of e-mails, Ager and Forsberg met for the first time a year ago at the Mall of America, where their kids immediately bonded. Last month they met for a second time in Rochester. As the women watched their children play in a motel swimming pool, Ager and Forsberg marveled at the similarities: the same mouth, dimples, diffident smile, big brown eyes and moles in the strangest places.

21 offspring, more questions

Zoe is autistic and expresses herself best in cartoons. In preschool, every time she drew pictures of her family, she painstakingly penned 21 babies in diapers, despite the fact that Zach was her only sibling. At the time, Forsberg had no idea that Zoe might be right.

For a long time Ager calculated that Donor 1047 had at least 21 offspring, mostly in the Upper Midwest. But when she took a closer look at CLI data, she has come to believe that his offspring could number more than 100.

"This guy was prolific. He was like Robo Donor," Ager said.

CLI follows the American Society for Reproductive Medicine standard that donors have no more than 25 births in a population area of 800,000 people, said Amy Erickson-Hagen, CLI's technical director in Roseville. Sometimes donors get restricted before they reach 25.

Only 5 percent of the 3,500 men applying this year to be sperm donors will be accepted, Erickson-Hagen said. "Our goal is to create healthy babies," she added.

CLI takes exhaustive medical histories of donors. It screens for dozens of hereditary and communicable diseases and is accredited by the American Association of Tissue Banks. Sperm is quarantined for six months before it is sold. Donors are paid monthly -- about $150 per specimen -- with "bonuses" when sperm is released from quarantine for sale.

In recent years CLI and other sperm clinics have moved toward greater openness, providing donor essays, baby photos and audiotapes. In addition to its anonymous donor program, CLI has created a known-donor program, which uses only men willing to be identified to offspring when the offspring turn 18. But it is not retroactive. Legally, CLI can't release the identities of anonymous donors.

"We receive numerous calls from patients who want to know what the ability would be for us to contact their donor," Erickson-Hagen said. "We definitely recognize and appreciate the needs of these families and couples. They're searching not only for sperm donors -- they're searching for relationships."

All these issues are part of an emerging debate in reproductive medicine, one of the few industries largely unregulated by the government and therefore completely market-driven, said Jeffrey Kahn, director of the University of Minnesota Center for Bioethics.

CLI compiles lists of births by repeatedly surveying doctors and clinics whose patients have purchased sperm. But Kahn said the lack of government monitoring to ensure that records are complete and adequate medical screening has been done poses two significant social and medical risks.

The first is that some donors are used often because they donate frequently, have traits that recipients want or have sperm that works well, Kahn said. That raises the prospect of many half-siblings in the same small area who might unwittingly marry and have kids.

The second risk is the possibility of passing to large numbers of offspring inheritable conditions for which there are no genetic tests. There is no genetic test for autism, Erickson-Hagen said.

"If you've got one sperm donor for whom the rate of autistic kids is X percent, you might want to know that, right?" Kahn said. "That would be something that recipients would want to know about in their decisions about which sperm donor to use."

No family history of autism

For five years, Sherry and Keith Forsberg tried to have children, only to learn that she had a deviated uterus and he had a low sperm count. So when her doctor suggested sperm donation, Keith was all for it.

She was thrilled to have Zach in 1991 and Zoe two years later with the same donor. But when Zoe still wasn't talking at 2½ and autism was diagnosed, some of Zach's learning problems came into focus. It was determined that he had Asperger syndrome, an autism spectrum disorder.

There was no history of these disorders in Forsberg's family, so Forsberg called CLI seeking Donor 1047's medical history. "I wasn't upset about it because they are my kids and I would not change them for anything," Forsberg said. But if other parents could be spared dealing with autism, they should be.

Weeks later a woman from CLI called Forsberg to tell her that the company geneticist said autism is not hereditary. Since Teddy was born in 2002, Ager has been watching closely but has seen no signs of autism in him.

Unconditional love

From the time Ager married Michael Persson in 1990 she knew that she would need a sperm donor to have children. Persson was older. He had two grown sons, a vasectomy and doubts about having another baby.

"I often say I willed Teddy into being," she says.

Ager investigated sperm donation, selecting CLI because it was accredited and had a good reputation. From its online catalog she chose Donor 1047 for his smart, sort of geeky persona and ordered sperm in batches of six vials for roughly $200 a vial.

Before Teddy was born, Ager suffered a series of miscarriages and a stillbirth. She built an online support network of other women with infertility issues and found the Donor Sibling Registry. It was there that she met Forsberg, who'd learned about it through an "Oprah" show. They logged on hoping to fill in the missing half of their kids' genetic heritage. And to connect.

Although Ager and Forsberg both live in small Midwestern towns, their lives are very different. Ager, 40, is a stay-at-home mom who does freelance Spanish and Portuguese translation. Her husband is a retired Spanish teacher.

Forsberg is a stalwart woman, a former bookkeeper who tends with remarkable good humor to a raft of medical problems -- from her own back pain to Zoe's early puberty to limited mobility in Zach's elbow that may require surgery. Her husband, Keith, has schizophrenia.

Both women are endlessly grateful for what they consider Donor 1047's selfless gift.

Shortly after Teddy's birth, Ager called CLI to find out about Donor 1047's availability. He had been removed from the online catalog but the sperm bank still had 100 vials of his sperm left. Wanting a second child, Ager called again last month, only to learn CLI no longer has Donor 1047 in stock.

"This new wrinkle ends the possibility of Teddy's having a full sibling," Ager said. "At 40 and then some, my prospects for conception literally dwindle by the half-year."

Ager has chosen a new donor. But Teddy may well have more half-sibs out there conceived from those 100 vials of Donor 1047's sperm.

Children's desire to know

As Zach, Zoe and Teddy get older, their mothers give them age-appropriate information about their conceptions. Before the Rochester gathering, Ager reminded Teddy that they were going to see his brother Zach and sister Zoe.

"I'm so glad that he's getting used to this now," Ager said. "It was always my wish to have him in on the secret. I'm curious to see how it's going to play out as he gets older."

Three years ago, when Zach fretted about ending up with schizophrenia, Forsberg told him she had used a sperm donor. Zach wanted to make sure that Forsberg was his biological mother. That was all he wanted to know -- at the time.

But there have been other problems in translation. Zach, who reads at college level but has a hard time expressing feelings, got a zero on a seventh-grade English assignment to write about his family tree. He hadn't turned in the assignment because he didn't know about his donor's family and refused to list Keith's.

"He won't put down something that's a lie," Forsberg said. "That's part of the Asperger's. He's not being ornery. He's being factual."

Forsberg has repeatedly told Zach that when he dates seriously he will need to get DNA tests because other parents of donor-conceived children aren't as candid as she is.

"Normally you don't have to worry if you're dating your brother or sister," Forsberg said. "You would know."

Sweet, normal times

The air conditioning is cranked high in the Rochester motel room and the children are on a sugar high from the goodies that Forsberg brought. She and Ager sit close, watching their children interact.

Forsberg shows Ager odd moles that both her children have between their toes. Zach has begun to develop serious allergies. Zoe and Zach both have second toes that are longer than their big toes. Did those come from the donor?

Teddy toddles on the pillows at Zach's head, plopping within breathing distance of his head and peering into his half-brother's eyes. For many adolescents this would be annoying. But Zach looks up and smiles at the little guy.

All this seems blissfully normal, Ager says. Then she catches herself and laughs.

"When you have to hold a family reunion in the Hollywood Bowl, there's nothing normal about it."

Kay Miller is at kmiller@startribune.com.

Story posted by permission