The particulars of Alexandra Gammelgard’s egg donations are a bit of a blur to her.
Between the ages 18 and 21, she donated to at least four infertile couples, using two, maybe three, agencies that paid her from $5,000 to $15,000 for each donation. She was trying to pay for her education at UC San Diego and didn’t keep track of the details.
“The college years of your life go by so fast, and you do so many crazy, random things that it’s hard to remember it all,” Gammelgard, now 23, says.
She believes at least four children were conceived from her eggs, results she was proud of. In recent months, however, she got grim news: One has Tay-Sachs, a neurological disease that usually kills its victims before age 5.
A child can develop the disease only if both parents carry a relatively rare genetic mutation. Gammelgard said she had no clue she was a carrier; she hadn’t been tested because she wasn’t in the groups at highest risk.
She knows now. The couple raising the sick child contacted the agency that arranged Gammelgard’s egg donation. The agency told her.
But neither she nor the agency has made any effort to inform the other families who used Gammelgard as a donor.
In the United States, nothing ensures that recipients of donated eggs or sperm are warned about defects later discovered in the donor’s family tree. In contrast to blood donations, no one tracks donors and their products.
The system is founded largely on a pledge of confidentiality -- the promise that the donor and recipients will remain strangers, linked only through third parties. Donors typically sign contracts severing parental rights and most obligations.
But genetic ties endure. When flaws in DNA slip through the screening process, they may fan out over generations, undetected until it is too late.
Even if Gammelgard’s other children do not have Tay-Sachs, they have a 50% chance of carrying the mutation. And these children, if they grow up to conceive babies with other Tay-Sachs carriers, have a 25% chance of passing along the disease.
For all Gammelgard knows, couples may have embryos made from her eggs in storage, awaiting implantation. Others may have conceived children she hasn’t heard about.
“It’s awful that in the United States right now, the buck stops with this young lady who donated,” said Elizabeth Stephen, an associate professor of demography at Georgetown University who has studied the fertility industry. “There is no tracking system and no enforcement.”
‘A big family’
Bruce Steiger recalls telling Rick Karl on one of their first dates: “I want to have a family -- a big family.”
Karl, raised as a conservative Catholic, had never considered the possibility. Over the years, Steiger convinced him that their well-paying jobs in the high-tech industry were going to get them only so far down the path to happiness.
“I’ve always considered having children to be pretty much out of the question, and that saddens me,” Karl remembers telling Steiger one day in 2002 during a walk along the ocean in Long Beach. “So, if we can do this, let’s go do it.”
Through a gay parents group, they found an agency, Surrogate Alternatives in Chula Vista, that specialized in finding women to provide eggs and surrogates to carry the child, for a fee.
Such agencies typically are small, for-profit operations, drawing donors and surrogates through ads and clients via the Internet or word of mouth.
Operated by a surrogate mother from her home, Surrogate Alternatives is essentially a matchmaker. Although the 9-year-old agency has a website highlighting its links with fertility doctors, it has no medical staff. Outside doctors, recommended by the agency or chosen by the client, handle genetic testing as well as egg harvesting, fertilization and implantation. Steiger and Karl had a rough start. After they selected a donor, a surrogate and a clinic, embryos were created in the lab using the donor’s eggs and both men’s sperm. But two efforts to impregnate the surrogate failed. They intended to try a third time, but the donor failed a drug test. A second egg donor didn’t work out either.
At that point, “we wanted an egg donor and a surrogate who had a track record,” said Steiger, now 42. “We didn’t want to take any more chances.”
Gammelgard seemed a good bet. She’d already helped at least one other couple conceive, through a different agency.
As a freshman, she’d noticed an ad in her college paper. “It was like ‘Be an angel,’ she recalled. “ ‘Make money for college. A family is looking for a donor.’ ”
She got in touch with several agencies, fielding offers from one, then another. “I feel like I look good on paper,” she said, noting that she was a high school valedictorian with interests in art and sports.
After examining Surrogate Alternatives’ Web catalog of donors, Karl and Steiger thought so too. She was tall, athletic and blond. She cited no serious family health problems. The couple picked her based mostly on a picture and questionnaire.
She had written: “I feel like egg-donating is my gift to give to the world.”
The number of American children born from donated eggs grows each year, reaching about 6,500 in 2005. Donated sperm accounts for an estimated tens of thousands of births annually. Many recipients and donors contact broker agencies with the assumption that screening and testing will be as thorough as the field of genetic science allows. After all, clients are spending a lot of money. Karl and Steiger estimate they spent about $250,000 on conception alone, with about 10% of that going to Surrogate Alternatives.In reality, scrutiny of donors varies widely. Tay-Sachs testing can be done for between $100 and $250, but fertility doctors say testing everyone for every known genetic disorder would be prohibitively expensive and is unnecessary.
Testing generally is limited to certain diseases linked to known high-risk groups. In the case of Tay-Sachs, that would be Jews and French Canadians. There are no governmental regulations, only guidelines set by medical societies.
In recent years, some parents have alleged that inadequate screening has led to tragic results. In 2003, a Santa Barbara family received a confidential settlement from a Los Angeles sperm bank that allegedly overlooked a prolific donor’s family history of kidney disease. Their daughter inherited the illness, which could cut short her life.
Even if industry guidelines are followed to the letter, rare genetic conditions sometimes slip through. Because there is neither a tracking system to catch problems nor a limit on how many families can use the same donor, the effects can multiply before anyone notices.
A Michigan sperm donor unwittingly carried a rare mutation that put his progeny at risk for leukemia and serious infection. He fathered at least 11 children, five with the disease. The pattern was noticed and reported in a medical journal last year -- only because of a coincidence: The same medical specialist treated the children.
Britain does things differently. Sixteen years ago, the government created a registry for egg and sperm donors, mostly to prevent offspring from inadvertently marrying relatives. Included are names, contact information and detailed personal histories. Donors and recipients have access to the registry, as do children once they turn 18.
Britain also limits the number of families that can use a single donor.
An approach like Britain’s would be a departure from the American tradition, which relies heavily on anonymous donation with no strings attached. But some U.S. fertility experts favor a voluntary registry that would include disease histories and pregnancy outcomes.
“The beauty of it is that the information helps everybody,” said Andrea Braverman, a Pennsylvania psychologist who is on a task force preparing a proposal.
“If you are having a child, you’d like to know that there were no problems with children born from that egg donor. And if you’re the donor, when it comes time to have children of your own, it might be nice to know there were no genetic disorders related to your donated eggs.”
Steiger said Surrogate Alternatives promised him and Karl that their egg donor would undergo a thorough screening. What they didn’t know is that few rules guide this process.
Genetic screening is a loose term that encompasses everything from a few questions on paper to an in-person interview with a certified counselor trained to find inherited diseases lurking in the family tree.
Even if all the right questions are asked, donors may not know all the answers, and some downplay the risks in pursuit of money. Testing, performed by doctors, is generally based on what the screening yields.
Gammelgard recalled meeting “at some point” with a genetic counselor, although she said she did not know if it was for Karl and Steiger’s case.
“You go through all the family members you can remember, where they came from, any health problems,” she recalled.
She said she reported what she had been told since she was 5 years old: that she was mostly Scandinavian. Although she didn’t say so on her Surrogate Alternatives questionnaire, she told The Times she had some “Irish French Catholic” lineage on her mother’s side.
The risk of carrying a Tay-Sachs mutation for most Caucasians is about 1 in 300. It is about 10 times greater for Jews of European heritage and French Canadians, for whom medical experts recommend testing.
But Gammelgard said she was a member of neither group. Irish Americans have a risk as high as 1 in 50, but testing is not recommended.
Karl and Steiger said they were not screened or tested for genetic abnormalities. They said they weren’t asked.
After the initial setbacks, the couple wanted a fresh start. They selected a new doctor, a well-known Westwood reproductive endocrinologist named Vicken Sahakian, to handle the fertility treatments and implantation.
“She was pure Scandinavian background, so there was no reason to test for Tay-Sachs,” Sahakian said of Gammelgard. “I still to this day wish there was something I could have done to prevent this, but there wasn’t.”
Legally, Karl and Steiger were on notice about the risks. They signed a contract with Surrogate Alternatives stating that the baby’s health was not guaranteed.
But they now believe someone -- the agency or the doctor or both -- dropped the ball. Gammelgard agrees.
“Why weren’t we offered this test?” Steiger asked. “It would have totally prevented this from happening.”
Pregnancy at last
After several attempts, the surrogate hired by Karl and Steiger got pregnant in May 2005. The initial ultrasound exam showed twins.
“We were excited. After so many tries, we thought that maybe it just made sense that we would end up with two children instead of one,” said Karl, now 47.
After 15 weeks, though, the surrogate miscarried one fetus. Karl and Steiger recalled that their obstetrician assured them that the other was healthy.
So it seemed when Krystie was born in January 2006, on Karl’s birthday. For the first few months, she hit all the milestones. At 10 months, though, her development stalled. She wasn’t interacting as much. She couldn’t crawl. She had trouble focusing her gaze.
Karl and Steiger took her to neurologists and occupational therapists, but it was an ophthalmologist who noticed the telltale cherry-red spots on her retina. Krystie was diagnosed the day before her first birthday.
The couple had intended to keep paternity a mystery. Both men’s sperm was mixed with Gammelgard’s eggs. When they found out Krystie was sick, though, doctors said identifying the mutation that caused the disease might help treat it.
Karl was found to be the Tay-Sachs carrier and, by inference, Krystie’s father. He is of Irish American heritage but had no Tay-Sachs in his family that he knew of. The test results suggested a mutation typical of French Canadians.
“I will always have this incredible amount of guilt because I’m the one who did this to our daughter,” Karl said.
The couple resolved to make sure it didn’t happen again, at least with this donor. The problem was in getting everyone down the line to communicate and cooperate.
Steiger and Karl knew little more than Gammelgard’s birth date and first name. So they asked Surrogate Alternatives to tell Gammelgard what had happened and arrange for a genetic test.
They wanted to determine the mutation she carried, in hopes of helping Krystie. This would also confirm that Gammelgard was the donor.
Surrogate Alternatives’ owner said she reached Gammelgard once and asked her to be tested but said she was unable to contact her again to follow up. “Her phone number has changed,” owner Diane Van De Voort-Perez told The Times.
The newspaper found Gammelgard in the San Francisco Bay Area by using public records and Internet message boards. She contradicted Van De Voort-Perez’s account, saying she has had the same cellphone number since college and was in continual e-mail contact with Surrogate Alternatives in the months after Krystie’s diagnosis. Several e-mails she provided appeared to support her assertion.
She said she gladly would have been tested if Surrogate Alternatives had arranged for it and paid the costs in advance.
The agency wanted Gammelgard to do the legwork and then ask for reimbursement, according to her account, which is supported by e-mails she furnished.
“That just pissed me off,” Gammelgard said. “I said, ‘Look, this is not my fault.’ ”
As for the other recipients of Gammelgard’s eggs, Van De Voort-Perez said Surrogate Alternatives has no way of contacting them. Different agencies handled all of her other donations, she said, and her agency never asked which they were.
Sahakian said he treated one of the other women who conceived using Gammelgard’s eggs but gave conflicting accounts of what transpired.
In an initial interview, he told The Times that he had not warned the woman about the Tay-Sachs risk. He also said he had treated the woman before Krystie’s conception, citing that successful birth as a reason why he thought Gammelgard was a safe choice as a donor for Karl and Steiger.
Asked for details weeks later, he said he had been mistaken: He had treated the woman after Krystie’s conception. Once he knew about Krystie’s Tay-Sachs mutation, he said, he had warned the woman about the risk.
The woman’s baby is healthy, he said, although he would not say whether the baby had been tested for the Tay-Sachs mutation.
“I can’t go out and tell every agency in the country to watch out for this donor,” Sahakian said. “I would be totally breaking the law because I would be revealing her [Gammelgard’s] private information.
“The really scary thing is that nothing would stop her from donating again,” he said. “She could simply go to another agency, another doctor, and not say anything about what happened.”
Gammelgard said she assumes she carries the mutation and that she is through with egg donation. But she said she is not inclined to try to contact the other agencies she worked with. She does not recall their names, she said.
“I kind of washed my hands of it,” she said, “and walked away.”
A fragile child
Krystie is now nearly 2, still fragile after an experimental stem cell transplant aimed at prolonging her life.
She was recently fitted with foot braces, in case she is ever able to walk. Mostly, she sleeps.
“Knowing what this disease is and what it does to kids, it’s beyond my understanding how someone can play the dice by not telling other parents,” said Dr. Lawrence Charnas, a neurologist treating Krystie at the University of Minnesota Children’s Hospital in Fairview, Minn.
Steiger and Karl have all but moved from their Rancho Mirage home to be near the hospital. Their careers are mostly on hold.
They keep a blog, detailing Krystie’s hemoglobin levels, her steroid regimen, her days of vomiting and pain, her nights of crankiness and crying. They rejoice over small improvements, grateful she is still alive.
They have helped launch the Cure Tay-Sachs Foundation, curetay-sachs.org, to raise money for research.
They wish they could do more.
“Those other parents have a right to know what might happen to their children or that their children might be carriers of this disease,” Karl said.
“But there’s nothing we can do about it. We don’t even know who they are.”