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Tool in development for families who use donor egg, sperm or embryo

Melissa Hovey and daughters

TELL tool will help parents inform kids that they were conceived via a donor Heading link

Melissa Hovey knew from the start that she wanted to tell her twin girls that they were conceived with eggs from an anonymous donor. She and the girls’ dad developed a strategy, and began talking to the twins in language they could understand when they were as young as 3 or 4 years old.

“I didn’t want to keep secrets,” says Hovey. “But I could certainly see how it would be easy not to tell them.”

That, in fact, was the case for most of parents in a study by UIC Nursing associate professor Patricia Hershberger, PhD, RN, FNP, FAAN. She found that 86% of parents who conceived via donated egg did not disclose this information to their children after 12 years, even though many said they wanted to at pregnancy.

Now, Hershberger is developing a tool to help parents tell their children if they were conceived via donated egg, sperm or embryo. The “Tell” tool, or Tool to Empower parentaL discLosure, is funded with a grant from the Association of Women’s Health, Obstetric, and Neonatal Nurses through its Every Woman, Every Baby program.

‘Can you help me tell?’

“Even though many of the parents in our study wanted to tell at pregnancy, they found they were unable to do so for a variety of reasons,” Hershberger says. “During the course of the study, some of them asked, ‘Can you help me tell? I really want to tell. Can you give me some resources?’”

The grant will allow her to work with web and graphic designers, a research team and other clinical experts to develop and test a prototype. Hershberger says she plans to include modules to help parents with the decision-making process, approaches to talking to their kids, and how to navigate complex emotions.

“We’ll not only be teaching parents about how to tell, but we’ll also touch on emotional issues that parents struggle with, such as fear of the child’s reaction and fear that the child won’t accept them as true parents,” she says.

Hershberger adds that she plans to tailor the tool to parents depending on what type of donation they used (egg, sperm or embryo) and their family make-up (e.g. two- or single-parent and gay and lesbian families).

Removing shroud of secrecy

Removing the shroud of secrecy from medical reproduction is especially important because of the explosion in direct-to-consumer genetic testing and high consumer interest in genealogy. This has taken control away from parents about disclosure, Hershberger says, as donor-conceived adults are finding out about their conception from these tests.

Hovey says she did have some early fears that her girls wouldn’t think she was their mom or that they wouldn’t love her as much. But she says she pushed those aside in favor of transparency.

She says the narrative she told her daughters began simply – “I got an egg from a woman who had enough because I didn’t have enough”— but she added details as the girls got older and had more questions.

Now age 14, her daughters Olivia and Grace say they’re glad their parents didn’t keep it a secret. Both said they might have felt like their parents had lied to them if they found out later in life.

“Because they told us when we were so young, it just seemed normal,” says Olivia.

As they’ve gotten older and have a better understanding of genetics, the girls say they’re glad they know so they didn’t look to their mom as a benchmark for health milestones, like when they would get their first period or how tall they would get.

“If we ever have questions, I can ask my mom, and she’ll of course answer,” says Grace.