A mother and son were devastated to find out the man who donated sperm for his conception had a genetic illness - and they were never warned.
Rebecca Blackwell and her 18-year-old son Tyler of Maryland tracked down sperm donor ‘John’ three years ago.
While he didn't respond to their letter for contact, John's sister found them online via Ancestry.com and, unaware her brother had donated sperm, asked why they wanted to get in touch.
When she found out he had a son, she told them of the fatal genetic disorder that had ruptured John's aorta at the age of 43.
She said John, two brothers and their mother all had an
'unnamed, never before seen genetic mutation' disorder, the 59-year-old special education teacher told MailOnline.
John's father, who didn't die from the aortic dissection suffered a stroke due to a lack of oxygen to the brain, Ms Blackwell said.
John also has a family condition of the connective tissue disorder Marfan's Syndrome.
‘Tyler had a time bomb ticking in his chest,’ she said.
‘It didn't occur to anyone to tell us.’
Though Tyler has since had surgery on the defect in June, questions are raised as to the Blackwells weren't informed.
The fertility industry in the United States is one of the most unregulated in the developed world, said Wendy Kramer of the Donor Sibling Registry, a group that has matched some 8,400 donor offspring with their half siblings and/or donors.
‘There are no rules or regulations about donor identification, testing donors, monitoring numbers of children or medical records,’ she said.
Ms Kramer conceived her own son via sperm donation.
‘No one is watching. There are no laws. They don't keep track.’
But laws are changing.
Come Friday, Washington is set to be the first state to give donor-conceived people the right to crucial health information about their biological parents when they turn eighteen.
Previously, they were not entitled to any information and medical records were rarely updated.
Advocated say the new law is imperfect but it's a 'first step' in allowing these children to be nationally recognised.
There are approximately 1 million children in the US born via a sperm donor.
Law at present requires donors only be screened for sexually transmitted diseases and some communicable diseases.
Advocates say there should also be testing for genetic diseases such as cystic fibrosis, Tay-Sachs disease and Fragile X syndrome.
Advocates say the anonymous donors, identifiable only by number, should end.
When a donor develops a genetic disease after donation, families are very rarely told, according Ms Kramer.
In a case in California, a donor passed on hypertrophic cardiomyopathy to nine of his 22 known offspring -one died, she said.
A 3-year-old developed Rasmussen's encephalitis, resulting in seizures and brain damage.
‘[John] should never have been a sperm donor,’ Ms Kramer told ABC.
‘How could such a thing happen in this era of medical advances and an explosion of genomic information about the causes and inheritance of disease, especially in the most medical advanced country in the world?’
'When the clinic goes out of business and where are those records?’ Washington reproductive lawyer Mark Demaray asked. ‘There are many practical problems.’
It is far better fregulated in the case of adopted children - all social and medical records are kept by the courts - but not with sperm donation.
‘Tyler is fine now,’ said his mother. ‘He's got an ugly scar on his chest, but he's a girl magnet.’
The single mother has since found out another of his half-siblings who live's in Seattle has the same disorder .
She worries about how many more of John's children may have the condition.
‘Sperm banks need to make an effort to collect updated medical information every couple of years,’ said Ms 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.’
Article: 21st July 2011 www.dailymail.co.uk
Read more about finding known sperm donors at www.prideangel.com