Edmonton in-vitro patient in 4-year battle to learn fate of unused embryo

A woman who underwent in-vitro fertilization at an Edmonton clinic has been unable to confirm the whereabouts of her leftover embryo four years after she requested that it be destroyed.

Jane Sheastarted visiting the Regional Fertility and Women's Endocrinology Clinic at the Lois Hole Hospital in 2011 after she tried unsuccessfully for four years to get pregnant with a second child.

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Shea said she and her husband "struggled for years. Nobody can explain why I couldn't get pregnant."

Shesaid she underwent a series of tests and exams, but the results came back normal. The couple finally had a baby girl in February 2013, throughIVF, an expensive process thatcan cost anywhere from $10,000 to $15,000 per cycle, and is not covered under the Alberta Health Care Insurance Plan.

Shea said the clinic offered to store her remaining embryo for free for one year after her daughter's birth before she had to make a decision: store, donate or destroy the fertilized egg.

Shea and her husband eventually decided to dispose of the embryo, signing the consent form in early 2014.

"They sent us the form, and we filled out the form and we mailed it back," she recalled. "And I thought it's done."

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But the couple received another phone call in 2015. They were asked what they wanted to do with the remaining embryo, Sheasaid.

Confused by the request, Sheasaid she emailed the clinic and was told the original consent form wasn't in her file. She signed a new form and mailed it to the clinic.

Then it happened again.

To date, Sheasaid she has received about six phone calls from the clinic since signing the original consent form, all asking what she wantsto do with the remaining embryo. In 2017, Sheasaid she had a half-hour phone conversation with a clinic employee.

"I told her I'm very frustrated. I'm angry. I'm mad at this whole situation," Sheasaid. "I thought it was over after I talked to her."

Shea was told everything would be taken care of. But on Jan. 23, she got another call from the clinic.

System 'error' may have led to repeat calls

Shea signed a third consent form on Feb. 2, this time with a note: "We need to confirm the embryo is actually destroyed. Please send us the document after it is done."

After repeated attempts, Sheasaid, she finally got in touch with another clinic employee on Feb. 16, and was told once again there still weren't any consent forms in her file. The clinic charges $200 annually to store an embryo, she said, but so far,Sheahasn't been notified of any storage fees.

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"We're worried," Sheasaid. "Me and my husband, we talk about this almost every night because we don't know exactly what happened."

Shea doesn't want her husband's name used for privacy reasons.

Alberta Health Services denied an interview request, but sent a statement to CBC News. The statement saidstaff arecurrently contacting patients with specimens at the clinic though Sheahas been receiving calls for four years.

We're worried. Me and my husband, we talk about this almost every night because we don't know exactly what happened.- Jane Shea, IVFpatient

"The Regional Fertility & Women's Endocrine Clinic is currently connecting with every patient who has egg, embryo, or sperm specimens stored" at the clinic, the statement says. The clinic wants "to determine if they wish to transfer specimens to a privately operated clinic for continued storage, or dispose of their specimens."

The clinic adds in the statement that it is using a master list of specimen owners.

"It is possible this patient had not been removed from the master list and was called in error," the statement says.

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Specimens are usually destroyed within a month of receiving a consent form, which are often signed in person, but can be sent via mail, the statement says.

But Sheastill hasn't been able to confirm whether her embryo has been destroyed or if it's still stored in the lab.

Worst fear: accidental donation

AHS gave CBC News the contact information for Janie Clink, executive director for women's health at Lois Hole Hospital for Women, which operates the clinic on the Royal Alexandra Hospital site. AHSrequested that the information be provided to Shea.

Shea said she spoke to Clink last Thursday, and was told she wasn't sure if the embryo had been destroyed, but would look into it.

For Shea, the mystery, confusion and recurring phone calls have made an already difficult situation worse, she said.

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Deciding to dispose of the remaining embryo wasn't an easy decision, and she felt pressured by the recurring requests to choose between donating or destroying it, she said.

"I know a lot of people think, 'Oh it's just anembryo.' But for us, actually I considered that's like a future baby and a kid," Sheasaid. "Like, whatever you do to this embryo, it's kind of like you do something to a baby, to our kid."

Sheasaid she and her husband debated whether to sign the consent form, but decided to dispose of the embryo because they didn't want to have more children or have to donate the specimen to another family.

In the worst scenario, we were thinking the embryo is not there anymore.- Jane Shea, IVFpatient

"We don't want our kid to live with somebody we don't know anything of," Sheasaid.

But she's worried that might have already happened.

"In the worst scenario, we were thinking the embryo is not there anymore."

She said she's worried a piece of her was donated without her consent.

"Every time I think about this scenario, I lose my temper. I can't even think about this possibility."

Improving communication

Shea said communication between the clinic and its clients needs to be improved so other patients don't have to experience what she went through.

"I don't remember how many times I left a message to their message line and never received any phone call back. It just never happened," Sheasaid. "I know they're busy. They're super busy. But I mean, at least someone can take care of all the messages, phone calls, emails. I mean, this is basic."

It's crucial that clinic employees follow up with patients, she stressed.

"Whatever [clinic staff] do to our embryo, you need to let us know, either by paperwork or you phone us or whatever, you just let us know," she said. "But now, we don't know anything. We're just sitting here guessing every day."