Infertile fathers fight stigma as 'DI Dads' (USA Today 06/14/2006)

By Rita Rubin, USA TODAY

Jason Schwartzman just turned 4, but he already knows that a sperm donor helped Daddy and Mommy become parents.

Of course, Jason doesn't yet understand how that worked. But, figures dad Eric Schwartzman, "you start telling them young, and it just becomes a normal part of their dialogue."

Schwartzman hopes that someday, donor insemination will become as matter-of-fact, as normal a topic of discussion for society as adoption. "My wife's and my view about it is, we'd rather be public if it helps dispel the stigma. If I become the poster child for this part of it, that's fine."

FROM 'DONOR 48QAH': A sperm donor that's been fruitful, to say the least

You can hardly pick up a newspaper or turn on the TV without seeing a story about single women or lesbian couples and their sperm donors. In these families, Mom clearly had outside help conceiving. But until now, fathers of children born through donor sperm insemination have drawn little attention.

Until recent years, heterosexual couples made up the bulk of parents whose babies — an estimated 30,000 or more in the USA annually — were conceived with donor sperm. You would never know, because no one spoke of it. Male infertility was something to be ashamed of. And donor insemination, or DI, smacked of adultery, with one man's sperm placed in the womb of another's wife. If children conceived with donor sperm ever learned the family secret, it was often after their dad's death.

To tell or not to tell?

Robert Moss, 46, recalls what a urologist advised after telling him that the only way his wife could get pregnant was with donor sperm. "He said, 'Now, don't tell anyone. You don't want anyone to know. You'll never want the child to know," says Moss, a Spartanburg, S.C., biology professor who has 14-year-old and 16-year-old children conceived with donor sperm.

Joanna Scheib, head of research at the Sperm Bank of California, speculates Moss' doctor might have meant well. "Maybe people believed if the child didn't know, there wouldn't be a threat to the relationship between the father and the child," says Scheib, who's on the psychology faculty at the University of California-Davis.

Moss not only told his children early on, but he and his wife, frustrated with a lack of information, also co-wrote Helping the Stork: The Choices and Challenges of Donor Insemination. "The idea of keeping family secrets that were that big wasn't attractive to me," he says.

Not that Moss didn't worry about how his children would react to learning that they weren't genetically related to him. "The biggest fear for me was the fear that this would change my relationship with my kids," he says. "All those worries are there while you're going through DI. Once the baby is born, they just disappear."

Moss makes it sound almost easy, but most men are about as comfortable discussing donor insemination as they would be having a prostate exam. "Men don't talk about their sperm counts in the locker room," says Robert Nachtigall, director of reproductive endocrinology and infertility at San Francisco General Hospital.

Figuring out why men tend to be close-mouthed about donor insemination isn't hard: "It strikes so close to home, because this is all about children and sex and family and really the most powerful stuff of human nature."

For similar reasons, adoption used to be so stigmatized that children were never told they were adopted. "Nowadays that seems quaint, if not bizarre," Nachtigall says. "Donor insemination has not reached that threshold yet."

Some find DI 'emasculating'

Shari Lusskin, head of reproductive psychiatry at NYU Medical Center in New York, recalls one couple in which the man was infertile — the case in about a third of couples who can't conceive. His wife wanted to try donor sperm, she says, but "he was so completely unable to handle this that it really contributed to their eventual divorce. It was emasculating to the nth degree with him."

Then there's David Hano. After a year of trying in vain to conceive, his wife's fertility workup found no problems. So, although Hano never imagined he could be infertile — a conviction he attributes to "the kind of male-ego type of thing" — he agreed to go for testing. Hano, 37, a mental health counselor in Baltimore, was shocked to learn his sperm count was non-existent.
So that his wife could experience pregnancy, the couple opted for donor insemination. She's due in August, and just about everyone in their lives knows she conceived with donor sperm.
Choosing donor insemination "takes a guy with a certain amount of ego strength, and it takes a woman who's sympathetic and supportive, and maybe those aren't your average people," Nachtigall says.

Schwartzman, 42, learned that his chances of having children were slim before he even tried. He had been born with undescended testicles, which raised his risk of testicular cancer, so he dutifully did self-exams. Six months before his wedding, he found a lump and saw a urologist. He didn't have cancer, but the doctor thought one testicle looked shrunken and ordered a sperm analysis.

That's how Schwartzman, at age 30, learned that his sperm count was "basically zero." The doctor was blunt: "Don't plan on having kids naturally. You can just adopt."

Schwartzman was stunned. "My whole life, all I wanted to be was a father." He asked his fiancée if she wanted to break off their engagement. "She said, 'Are you nuts?' "

Still, he says, the first few years of marriage "were not the typical honeymoon period."
Despite counseling, his infertility "greatly, greatly affected our marriage. My guilt, for lack of a better word, as to what I could or could not do, had me withdrawing from my wife in the bedroom and emotionally overall."

About four years after their wedding, though, the Schwartzmans began thinking about starting a family. They first tried in vitro fertilization with the few sperm that could be extracted from one of his testicles, but two attempts failed.

Because the Schwartzmans wanted to experience pregnancy, they opted for donor sperm. The third donor was the charm. Schwartzman's wife conceived Jason after the first insemination with that man's sperm. About two years after Jason was born, she delivered Zoe, conceived with sperm from the same donor.

If the child wants to know

Schwartzman started blogging about donor insemination and his family in August. He also moderates "DI Dads," a Yahoo discussion group for infertile men who are considering or already have become fathers via donor sperm.

While some plan never to tell their children they were conceived with donor sperm, others, such as Schwartzman, feel it is their paternal duty to collect as much information about the donor as possible, should their children ever ask about their genetic heritage.

"We have the full profile of all the medical information that was disclosed," says Bob Battel, 33, a farm management educator in Reed City, Mich., whose infant daughter was conceived with donor sperm. "As far as finding out the identity of the actual person, when we started this, we never thought about that."

But Battel says he has come to realize that "she might want to know someday. I guess I would feel obligated to provide her with all the information she's entitled to know further on down the line."

Wanted: Long-distance donor

Jared Teter and his wife live in New York state, but they used sperm from an Atlanta bank. "I just didn't want to walk around wondering whether this guy or that guy or this guy was the donor to our daughter," says Teter, 30, an audiologist. They chose an "open identity" donor — one who agreed to be contacted by any offspring when they reach age 18 — in case their daughter ever asks about him.

Even before Morgan was born in January, Teter connected with a network of women who had conceived with sperm from the same donor. They met through the Donor Sibling Registry, a website that helps people conceived with donor sperm or their parents find each other. Teter now knows of eight children conceived with sperm from the same man as Morgan was. He's putting their photos in a scrapbook for her.

Schwartzman's children were conceived with sperm from a bank that does not offer open-identity donors, but he would help them find the man if they ever express an interest. "I'm all for it if down the road, they want to have a relationship," he says. "The truth of the matter is this person is half of who their past is."

Schwartzman has placed a bio, childhood photo and voice recording of the donor in his family's safe deposit box.

He and his wife are willing to pay the donor $500 for photographs taken throughout his life. The donor told the sperm bank that he's considering their request.

And, thanks to the Donor Sibling Registry, Schwartzman has been in touch with the single mother of a 3-year-old daughter conceived with sperm from the same donor as his kids. Soon, he hopes, his children will meet the little girl.

As the Use of Donor Sperm Increases, Secrecy Can Be a Health Hazard (NYT 06 June 2006)

Second Opinion

As the Use of Donor Sperm Increases, Secrecy Can Be a Health Hazard

By DENISE GRADY
New York Times / Health & Fitness
Published: June 6, 2006

Sperm donor No. F827 aced all the tests. He was healthy, and he said his parents and grandparents were, too. Under a microscope, his chromosomes looked perfect. He also turned out to be quite prolific: his deposits to a Michigan sperm bank during the 1990's produced 11 children.

But he passed a serious gene defect to five of those children, a blood disease that leaves them at risk for leukemia and in need of daily shots of an expensive drug to prevent infections. They also have a 50-50 chance of passing the disease to their children.

Shouldn't the sperm bank have detected the bad gene and rejected the donor?

Geneticists say no, because the disease is extremely rare and sperm banks cannot be expected to test for every possible mutation.

But that bit of uncertainty raises other questions. Should any donor produce so many children, when they will be scattered far and wide, making it harder to recognize a pattern of illness than it would be if they all lived under one roof? It's also worth asking whether damage could be limited by requiring sperm banks to keep track of donors' babies so that if one or more got sick, other families who had used the same donor could be warned, sale of the sperm stopped and the donor notified.

The Michigan case, described last month in The Journal of Pediatrics, could be a warning signal to sperm banks and their customers - or it could be just a fluke, such a weird set of circumstances that it has no bearing on anyone else. It's hard to tell for sure, because the buying and selling of sperm is an intensely private, largely unregulated business. A lot is not known, and many participants want it that way.

Most donors are anonymous, and sperm banks strictly guard their privacy and that of their recipients. Tracking the health of the children that are born as a result is not required, and there are no laws to limit the number of offspring per donor. The Netherlands allows no more than 10, but in the United States that decision is left to individual sperm banks, and they make their own rules. Typically, each sample is divided into multiple vials, and the vials are sold for hundreds of dollars apiece.

News reports and Internet tales abound of sperm donors who claim to have fathered dozens or even more than 100 babies via one or more sperm banks, but the stories are impossible to verify because there is no requirement that sperm-donor births be identified. Many birth parents want to keep the details of conception secret anyway, and might not tell even if they were asked.

Demand for donor sperm is high and getting higher, and includes not only heterosexual couples with fertility or health problems but also lesbian couples and single women who want to have children on their own. The fertility industry estimates that 30,000 births a year result from donated sperm, but the real number is not known.

Birth parents of some of those children have begun questioning sperm bank practices, particularly the anonymity of donors and the extensive use of some of them. Some older children want to know who their biological fathers are, and some parents fear that their sons and daughters could one day unknowingly meet up with half siblings, commit incest and have babies with genetic problems as a result.

Still, sperm banking seems to have a good track record, at least as far as anybody can tell. Donors are tested repeatedly for H.I.V., hepatitis and other infections. As for genetic disorders, there have been few other published reports of problems traced back to donors. The known cases include a donor in California who passed on a hereditary kidney disease and one in the Netherlands who fathered 18 children and was later found to have a serious neurological disease that his offspring have a 50-50 chance of inheriting.

The Food and Drug Administration has tissue-banking rules that apply to sperm banks, but those rules concern infectious diseases rather than genetics, and do not limit the number of pregnancies per donor or require tracking of the children's health. A trade group, the American Association of Tissue Banks, accredits sperm banks that meet its standards, but few banks participate in the program.

The Michigan cases came to light only because all four families with sick children happened to consult the same specialist at the University of Michigan, Dr. Laurence A. Boxer. The disorder, severe congenital neutropenia, is so rare - it affects only one child in five million - that when Dr. Boxer suddenly saw several cases in one year he suspected that something strange was going on.

All the parents said they had used sperm donors, and when Dr. Boxer asked, all showed him cards bearing the same donor number, F827.

Genetic tests on all five children showed they had identical copies of the defective gene, but none of their mothers had it. That left only the sperm donor. Dr. Boxer and his colleagues suspected that the man probably had an unusual condition, gonadal mosaicism, in which he carried the bad gene only in his sperm cells, and not the rest of his body.

Otherwise, he would have been ill, too. The doctors figured that he probably had no symptoms, and no idea that he carried the mutation.

But they could not prove their theory, because they could not test him or his sperm. He had moved, and the sperm bank, International Cryogenics in Birmingham, Mich., said it could not find him. It offered samples of his sperm for testing, but an ethics panel at the University of Washington, where the genetic analyses were done, said tests could not be done without his permission.

The director of the sperm bank, Mary Ann Brown, said, "We were thoroughly wanting to get to the bottom of this."

The donor's remaining specimens were thrown away, she said, and the bank now takes Social Security numbers and other information to make it easier to find donors who relocate.

International Cryogenics turns away 95 percent of potential donors because their medical histories or their sperm are not good enough, Ms. Brown said; many of those accepted are medical and dental students.

The bank sets a limit of 20 pregnancies per donor, she said, adding that other sperm banks allow more.

The donors are paid $45 for each sample, and the samples are then subdivided, averaging three vials of 20 million motile sperm apiece, with each vial selling for $200 to $250.

When International Cryogenics heard about the problem with its donor, it did not notify other recipients, Ms. Brown said, at first because the company's own genetics consultant questioned Dr. Boxer's findings, and later because the company reasoned that even if other children had developed the disease their families would already know it.

But the company did release the donor number, because when news of the case came out, sperm bank clients began calling to find out if they had been recipients and if their children were at risk.

No sperm bank could have prevented what happened in Michigan, Ms. Brown said. Banks test for the most common genetic disorders, like cystic fibrosis and sickle cell anemia, but not for rare ones like severe congenital neutropenia, because it would require a huge amount of time and money. So the banks and their customers take a bit of a gamble, knowing that odd mutations occur from time to time, but that sperm donors have no more risk of them than men who conceive babies the old-fashioned way.

But sperm donors do differ from most other men in an important way: they can have a lot more children, and father them simultaneously instead of one at a time. Private deals that involve conception might seem like a fine way of doing business to the people who sign the papers, but what suits the grown-ups may not always be in the best interests of the children.

Quality of Men's Sperm Falls With Advancing Age (2006 June 5)

Quality of Men's Sperm Falls With Advancing Age, Study Finds2006-06-05 17:00 (New York)

By Todd Zeranski
June 5 (Bloomberg) --

The genetic quality of men's sperm decreases with advancing age, raising the risk of dwarfism andreducing the chances of a normal pregnancy, a new study publishedby the National Academy of Sciences of the USA said.

``We're just opening the door to this new line of research,'' Dr. A.J. Wyrobek, a senior biophysicist at theLawrence Livermore National Laboratory in California and co-headof the study, said in a telephone interview.

Men who delay reproduction increase the risk of passing certain genetic diseases onto their children, at a time when ithas become more socially acceptable to delay having children, Dr.Wyrobek said.

Since 1980, U.S. birth rates increased as much as 40 percentfor men 35-49 years old, and decreased as much as 20 percentamong men younger than 30. Research had already found the spermof aging men is less fertile and more prone to spontaneousabortion.

He said prior research has found a correlation between increasing age and 20 genetic defects, and the new researchsought to uncover whether the cause for two abnormalities --dwarfism and Apert syndrome -- was found in men's sperm.

A parallel genetic analysis of men's sperm found a higher incidence of Apert syndrome, which results in severe deformity inthe face and skeleton, among inner-city males in Baltimore, Dr.Wyrobek said. He said scientists did not yet know whether factors such as diet, socio-economic level or ethnicity caused the deformity.

DNA Ages Differently

The study also found that, unlike women, aging men were not more likely to have chromosomal duplications or losses that causegenetic diseases such as Down's syndrome. Scientists used the latest technology to study the breakupof DNA in sperm. While it was generally found that aging men haddeclining sperm quality, individual variations abounded, with some older men having sperm of higher genetic quality than someyounger men. ``There may be men that have multiple different risks,'' Dr.Wyrobek said. The study group was comprised of 97 healthy, non-smoking men from 22 to 80 years of age.

Story illustration: For the National Academy of Sciences Website, see http://www.nasonline.org/site/PageServer