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The Current

After a mix-up during their fertility treatment with disgraced Ottawa doctor Norman Barwin, a couple says Canada's fertility laws need to change and give people born through donor eggs or sperm the right to know their origins.

When an Ottawa couple learned in the early 2000s that they needed medical help to have children, they were referred to a doctor known locally as "the Baby God."

"All I saw was that he'd won the Order of Canada, that he was renowned, that patients revered him," said the mother. "I never saw anything that would suggest that there was a problem."

With the doctor's help, the couple went on to have two children. (CBC's The Current is not naming the couple to protect the identity of their children.)

A few years later, however, they started reading stories about him in the papers.

The first to catch their attention was in 2010, when two separate women sued the doctor because they'd been inseminated with the wrong sperm. Then, in 2013, the College of Physicians and Surgeons of Ontario investigated him for these and other incidents.

By mid-2014, their former doctor no longer had a medical licence. It occurred to the couple that they could have been victims, too.

(Ben Shannon/CBC)(Ben Shannon/CBC)

"I wanted to go get the children tested," said the mother, who acknowledged that her husband was more reluctant.

"I guess part of me just really didn't want to know," said the father. "Because once I knew, I knew that it would not be possible to unknow that. So we just let it go."

In November 2016, the doctor, Bernard Norman Barwin, was in the news yet again — this time because his own sperm had been used to create children with patients of his clinic. The uncertainty was now too much for the mother, and she pushed to have the family tested.

By this time, a class action lawsuit, which has yet to be certified, had been launched against Barwin. It included not only the people conceived using the doctor's sperm, and their families, but other victims, too — mothers who'd been inseminated with the wrong sperm; offspring who were supposed to be full siblings but weren't; and men who had stored sperm before cancer treatment, and whose sperm was no longer usable.

Barwin has declined to comment.

The couple got in touch with the Ottawa law firm Nelligan O'Brien Payne, which was handling the case. The lawyers arranged for the mother, the father and the two children to have their DNA securely tested.

In March 2017, they got the results.

(Ben Shannon/CBC)(Ben Shannon/CBC)

"When the email came in, we were getting ready to have dinner," the mother recalled. "My heart stopped." She started to cry. Her husband was sitting right across from her and asked what was wrong.

"I said, 'The results came in and the kids aren't yours. Neither one of them.'" The mother remembered he just looked at her stoically and smiled.

"The smile kind of said that that’s what he had been expecting," she said.

Before this happened, the couple had never given much thought to assisted reproduction. But they saw how little protection there was for families like theirs.

Peter Cronyn, the lead counsel on the class action lawsuit, said the fertility industry stands in stark contrast to how other industries are regulated.

"If you look at how our society has responded with a regulatory framework to protect our investments and our banking practices, it's an incredibly robust regulatory environment," he said.

"Yet our children have to be at least as important as our money is to us, and we have a vacuum — absolutely no regulatory framework to protect that aspect of our society."

So began a new and complicated chapter in this family's origin story.

Norman Barwin had been a champion of women’s reproductive rights. He'd stood up for abortion rights, and had helped lesbians and single women have babies at a time when no one else would. He'd been decorated with the Order of Canada. (He resigned from the order in 2013.)

The claims against Barwin are unlike anything Canada has seen before. But they shine a new light on issues that have been plaguing the fertility industry for years.

For instance, there were no records that could tell the Ottawa couple where the sperm that had helped create their children had come from. Doctors' records are only kept for 10 years, and there is no central registry for sperm donors in Canada.

No one knows how many offspring any single donor has. "It really opened my eyes to how broken the system is," the mother said.

The couple wasn't sure what to do. The lawyers told them it was unlikely they would find out who the biological father was. Apart from the patients who discovered that Barwin himself was the biological father, no patient in the class action had yet found the identity of a mistaken donor.

It could be a man who'd stored sperm prior to cancer treatment. It could be an anonymous donor. Or, worst of all, it could be another patient who might try to assert parental rights.

The Ottawa father wasn’t keen on tracking down the donor.

"I'm not sure if I really wanted to put a face to him. Actually seeing another human being just makes it more concrete. So I didn't push for that."

But the mother needed to learn who the man was.

She told the lawyers, "I don't know if it'll be a year or 10 years, but I am going to find him."

She didn't have a lot to go on. But she did have the donor's DNA in her house — in the form of two children who carried some of his genes.

She ordered online genetic test kits from 23andme, hoping it would lead to the donor's relatives, and ultimately to the donor himself.

While she waited for those results to come in, she scoured the internet using advanced image recognition technology, looking for photos of kids who looked like hers.

(Ben Shannon/CBC)(Ben Shannon/CBC)

She found one, as well as contact details. When she got in touch with that child's mother, she learned that the child had indeed been conceived using a sperm donor.

"I thought, Bingo," she said.

Tests suggested the Ottawa woman’s children shared a biological father with the child she'd found on the internet — a sperm donor from the ReproMed sperm bank in Toronto.

The Ottawa couple still didn't know his name, but they now had a donor number. They reached out to the sperm bank for confirmation that he was the biological father — a paternity test — but the bank said it didn't have the donor's genetic material on file, and it was against its policy to contact him.

The mother decided to find out more on her own. She went to the Donor Sibling Registry, an online meeting place for donor-conceived people and their parents. Using the donor number, she was able to connect with other parents of kids conceived with this man's sperm.

One of the women on the site had kept the profile of the donor, which listed his education and his profession. Two others had his photo.

Meanwhile, the children's results from 23andme had come in. After loading the information into various online databases, the mother found a woman who was a cousin of one of the donor's parents.

"I was able to go through birth records, death records, get a whole picture of her father's family tree.

"And I went through every male on that family tree. I literally got down to the last family. I put this man's name into LinkedIn, and I saw his photo staring back at me."

"I guess I thought when I see him, I'll recognize him, he'll look like the kids. But there was nothing. And I thought, How could this be? How could this stranger be the father of my children?"

She knew she wanted to contact him, but she wasn’t sure how to do it.

"Do I send him an email? What if he ignores me? Do I just show up at his place of work? Do I show up at his house? Do I call him on his cell phone? I had all of those possibilities, because I had all that information."

In the end, she just sent a brief email, with a link to the court case, asking him to get in touch.

(Ben Shannon/CBC)(Ben Shannon/CBC)

The donor got the email while he was at work, right after a lunch meeting.

"It was shocking to receive," he said. At first, he wondered if it was even real. But if it was, what would it mean for him that his sperm had been used this way, without the recipient's consent? It made him nervous.

"I immediately contacted ReproMed, and their only advice was not to have any more correspondence with this individual," the donor said. "Which I ignored."

ReproMed did not respond to numerous requests from CBC's The Current for comment.

The donor agreed to do a paternity test, which confirmed he was the biological father. He also passed on health updates about his family.

"It took me a little while to get over the shock and fear, but once I made contact with this mother, I came to realize very quickly that it was genuine, and I wanted to help."

The Ottawa couple now felt ready to break the news to their children. They started by telling them they'd had trouble conceiving, and as a result, they had seen a doctor for help.

"I told them the doctor had made a mistake, and that he'd accidentally inserted somebody else's sperm in their mother," said the father, "and that they weren't biologically my children.”

Their daughter let it quietly sink in. Their son refused to believe it.  

"He just said no, I made a mistake, it can't be true," said the father. The boy said maybe it was true for his sister, but not for him.

"I didn't know what to tell him. I had to keep repeating that he was still my son, even if we're not biologically related. He'll always be my son."

Children born through sperm or egg donation in Canada do not have a right to know who their donor is.

Tom Hannam, a Toronto fertility doctor, said that some donors and intended parents have understandable reasons for supporting donor anonymity.

For one thing, he said Canadian society isn’t completely comfortable with sperm donation. "People make jokes about it to essentially express their discomfort," Hannam said.

He said this is part of the reason why there are currently only about 30 men willing to donate sperm in Canada. Hannam also acknowledges that sperm donation in Canada dropped off mainly in response to strict screening regulations introduced in the 1990s. (Canada meets the demand for sperm by importing it, mostly from the U.S.)

Hannam said he is concerned that abandoning anonymity would further reduce the number of Canadian donors.

The Ottawa mother is unpersuaded by such arguments. She said that "if the only way we can get people to donate is to lie to them — to tell them that we can protect their anonymity or to tell them that the children conceived by their donation won't mind that they're anonymous," then "maybe we shouldn't have an egg or sperm donor program at all."

Hannam said he'd like children born through donation to have full access to their biological heritage, and even to meet their biological parents if that was important to them.

He and other doctors try to counsel intended parents that openness is the best way forward, but many parents still see anonymity as a protection.

"Their biggest fear is that their child will be taken away from them," Hannam said. "And if that doesn't sound fully rational … I can tell you it feels very real to the couples involved. They're working from a position of deep anxiety and deep despair."

Working with donors to relieve infertility is the most difficult part of his profession. "It's the part that has the most ethical dilemmas," he said. "I can't tell you what I think the best option is here, for even as I recognize the rights of children to fully find out their biological heritage, I know, too, that I'm compromising future parents' opportunity to be able to have a child."

Both the couple and the donor in this case believe Canada’s law should change to make offspring a priority — to give people born through donor eggs or sperm the right to know their origins.

"What I think the offspring have absolutely every right to is a name and information, background, heritage, medical information, the ability to contact that donor if they have questions," said the donor.

The children in this case have no plans to meet the donor.

The mother pointed out that donors are adults who have chosen to donate, and intended parents are adults who have chosen to use donated eggs or sperm. But that still leaves one group with no say in the process — the ones who don’t know their biological parentage.

"The children did not have a choice. What we need to do is open that choice to them."