Disclosure tricky for parents of egg donor kids

By on March 25, 2008

By Patricia Wen The Boston Globe
March 12, 2008

MEDFIELD, Mass. – Cara Birrittieri is set to have a talk with her 3-year-old daughter soon, something that has been on her mind since Victoria was just a fetal ultrasound image.”Part of me wishes I didn’t have to tell her,” Birrittieri said. “The love is so intense for this kid — I mean, she is mine.”Yet in the months to come, Birrittieri plans to explicitly tell Victoria the way in which she also is part of another woman, a graduate student in her 20s who donated the egg that helped create the preschooler.

This particular version of a child’s origins is so complicated, and sometimes so painful, that some parents never try to explain it.

“It’s easier not to tell,” said Birrittieri, a 48-year-old former television health reporter. “Most women go through hell with infertility, and this was their last chance. Rather than grieve the loss of the child they didn’t have, they make this child that child.”

44% don’t plan to tell.

Research shows that as many as 44 percent of parents who used egg donors have no plans to tell their children the truth about their origins, a figure that surprises psychologists and fertility specialists who had expected a higher rate of disclosure at a time when openness is encouraged about such matters.

“The technology is so far ahead of the psychology,” said Alice Domar, a psychologist and director of the Mind-Body Center for Women’s Health at Boston IVF, the state’s biggest fertility clinic.

Therapists say they know these talks with children are never easy, and must be done slowly in age-appropriate ways, but they had assumed parents using egg donation would want to be open, embracing the latest psychological wisdom as easily as the newest technologies.

The most current thinking about disclosure comes from vast research done on adoption and sperm donation, two of the most common options used to address infertility. Researchers found children kept in the dark about their origins often felt betrayed when they later learned the truth, and more so, if they discovered accidentally through a relative or family friend.

Also, given the mounting evidence about the powerful role of genetics in health, many psychologists say children have a right to know their medical history.

Still, even as psychologists advise openness, many parents who used the latest in egg-donation technology have no plans to tell their children, citing the complexity of the narrative, a desire to protect the child from being seen as a “science fiction” curiosity, or a belief that it remains a deeply private family issue.

Some mothers who gave birth and nursed the child are reluctant to tell their child anything that diminishes their role as the mother.

A 2005 study of 148 couples who used a West Coast infertility clinic for egg donation found that 27 percent had already told their children; 53 percent had not yet disclosed but said they would at some point in the future; 12 percent did not plan to tell; and 8 percent remained undecided.

A 2004 study of British parents who used egg donors found that 56 percent planned to tell their children, while 44 percent had decided against telling or were undecided. Researchers say there is a shortage of reliable data because many parents using egg donation decline to participate in studies.

A 52-year-old former Waltham resident said he and his wife have no plans to tell their 7-year-old son that he was conceived with his father’s sperm and a donor egg, largely because they don’t want to upset him with a hard-to-understand story.

The father, who asked that his name not be used to protect his family’s privacy, also said his wife does not want to introduce the image of a potential second mother.

“She wants to keep the status,” he said. “She’s worried that talking about the egg donation will change her status.”

Explaining egg donation to a child is not easy. In talking to Victoria, for instance, Birrittieri will have to explain that her womb nourished another woman’s egg, which had been fertilized with Birrittieri’s husband’s sperm.

Additionally, she will have to explain to Victoria that her 8-year-old brother has a simpler story: He is the product of both of his parents’ genes.

Birrittieri, who has written a book about a woman’s biological clock, couldn’t conceive a second time.

Other factors may also discourage disclosure, including religious considerations. The Catholic Church, for instance, opposes high-tech fertility procedures, including egg donation.

Several fertility organizations are trying to coax prospective parents into confronting the issue earlier in their child-raising years.

Two years ago, the Society for Assisted Reproductive Technology put out an ethics paper encouraging parents using egg donors to tell their children. In the last five years, nearly a dozen books have been published helping parents to explain egg donation to their children, or to better understand their own post-birth emotions.

Last summer, Resolve of the Bay State, a fertility group, held a seminar, “Talking with Children about Their Origins,” for prospective parents, and similar events are planned, said Rebecca Lubens, head of the group.

A 51-year-old Cambridge woman, who gave birth to twins through egg donation, has used a Dr. Seuss book, called “Horton Hatches the Egg,” to explain their entry into the world. When asked how they came to be, she tells her twins, “Mom had a helper.”

**Note from Marna: While I support disclosure to your child (I feel each child has a right to know their origins) I don’t feel like it’s the world’s right to know how our children were conceived unless we are comfortable with sharing that information. So please remember, Mom’s and Dads — “You can always tell but you can never untell.”

1 Comment
  1. Reply

    Lonny Higgins, MD, FACOG

    March 26, 2008

    Disclosure is tricky in a large part due to the inappropriate language that counselling professionals continue to use in conjunction with advising parents how to talk about germ cell assistance in sharing the creation story of their children. Disclosure to a child about his or her birth origins needs to be understood as a distinct issue from disclosure to other persons of interest be they family or medical professionals. The latter decision has its own criteria based on our child’s future medical needs and our particular cultural/family values. As with all other decisions pertaining to our children, we parents are in the best position to assess the risks and benefits of disclosure to whom on behalf of our children.
    All parents need to understand that children are not primarily defined by nature (genetics) any more than they are by nurture (womb, or later environment). Having struggled with infertility, we know better than most, that our children were created ONLY because we envisioned them and worked hard to bring them to life as no spontaneously conceived child will ever be. Our children have every right to understand that no one else even comes close to the role of parent, no matter how generous the contribution, be it a womb or a cell that provides a partial or even a total blueprint.
    The bottom line is:

    Until the professionals start to get their own thinking straight about the recommended language to use in disclosure, parents are right to trust in their reluctant instincts. The minute I hear or read inappropriate adoption language recommended,such as “I am your spiritual mother, (or)… your life-giver,but your biological mother is….” I know the advice is going to be inappropriate and confusing to the child. A mother is a mother is a mother, and our children deserve to enjoy the exclusivity of that relationship as with any other child.



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