Sperm Donor's 24 Kids Never Told About Fatal Illness

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Washington Law is 'First Step'

Washington state lawyer Mark Demaray, who works with many couples seeking assisted reproductive technology (ART) and is president of the American Academy of Adoption Attorneys, said the American fertility industry should also look to the adoption world as a model.

When a child is adopted, all details on the social and medical history of the biological parents must be kept in court records in case of a medical emergency.

"That hasn't been required with ART, where a child may not have the ability to find a donor or medical information," he said. "What about when he needs a bone marrow transplant or a blood transfusion? The donor child is at a disadvantage."

"And when the clinic goes out of business and where are those records?" he asked. "There are many practical problems."

Demaray said the Washington law has problems, including the waiver of disclosure. And the term "identifying information" is also not adequately defined. Social Security and privacy laws may also impede getting donor information.

But, he said, the new law is a "first step" and may lead to a national donor registry to keep track of donors and their offspring.

"Almost everyone agrees that there should be a way to get in touch through the clinic or a confidential intermediary," he said. "Egg donors who are in their mid-20s who donate ovums may have kids of their own some day with half siblings. What if her child needs a bone marrow transplant?"

As for Tyler Blackwell, finding out his biological father's medical history saved his life. Although he had no symptoms, his mother took him to Johns Hopkins Medical Center in Baltimore to get a baseline screening of his heart. Doctors ruled out Marfan's syndrome, but they found he had an aortic aneurysm just waiting to rupture.

"Tyler is fine now," said his mother. "He's got an ugly scar on his chest, but he's says it's a girl magnet. They give him some TLC."

Tyler will have to be monitored by doctors for the rest of his life. Just recently, he was told he could not participate in scuba diving at Sea Camp because he might get a collapsed lung, said he mother.

She has since discovered that one of Tyler's 23 half-siblings -- another donor-conceived child who lives in Seattle -- also has that genetic heart disorder. She wonders how many more are affected.

"Sperm banks need to make an effort to collect updated medical information every couple of years," said Blackwell. "They made no effort until I came up with a problem. And I don't think sperm donors should be anonymous. We didn't get to the truth until his sister called me. It shouldn't be secret."

"There is no one who knew about it," she said. "If I could foretell the future, I would have picked a different donor. I didn't know."

Learn more about the Donor Sibling Registry

Read gamete donation guidelines from the American Society for Reproductive Medicine (ASRM)

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