Talking about birds and bees and technologies
Parents who used in vitro fertilization wonder what to tell kids, especially if donors helped
By HELENA OLIVIERO
The Atlanta Journal-Constitution
Published on: 03/19/04
PHIL SKINNER/AJC STAFF
Bill and Leslie Mackinnon with their 13-year-old twins. "We celebrate how we got Elliot and Annelise," Leslie Mackinnon says. "If it weren't for wonderful science, we would not have them."
PHIL SKINNER/AJC STAFF
A framed photo of eight cells in a petri dish has a place of honor in the Mackinnon family's Atlanta home.
PHIL SKINNER/AJC STAFF
Annelise (from left), Elliot, Bill and Leslie Mackinnon play cribbage in the kitchen of their Collier Hills home. The Mackinnons were upfront with the twins about the circumstances of their conception, but many parents have a more conflicted attitude toward disclosure.
"We celebrate how we got Elliot and Annelise," said Mackinnon. "If it weren't for wonderful science, we would not have them. Secrets generate shame — and I am not ashamed."
Leslie Mackinnon of Atlanta didn't want the knowledge of how they'd been conceived to ever come as a surprise to her children. Even before her pregnancy showed, a silver-framed, grainy photograph of a fertilized egg rested on a glass table near the front door.
As science opens the door to parenthood for more infertile couples, a growing number of parents are struggling with how — and in many cases, if — they should ever tell their children how they were created.
While many infertility therapists favor disclosure, the medical community is less convinced, particularly when the beginnings are complicated by donor eggs and sperm.
Georgia's first in vitro fertilization baby — Jeanna Caputo of Dunwoody — is 19 now. And since that remarkable birth, IVF has grown increasingly common and enjoys better success rates. In Georgia alone, more than 1,700 assisted reproductive technology procedures are performed every year. Nationally, about 107,000 ART procedures — which include IVF and related procedures that consist of the egg and sperm being handled outside the body — are performed.
And the most recent Centers for Disease Control and Prevention surveys estimate that 15 percent of women of reproductive age have sought or used fertility services.
However, there's still very little data about how much these parents are revealing to their kids about their beginnings. The National Institutes of Health is helping fund a four-year research project to interview more than 100 couples going through the experience, focusing on couples who relied on donor egg and sperm.
"We are dealing with a very fascinating question [about disclosure]," said Dr. Robert Nachtigall, who is leading the study. "We don't have 3,000 to 5,000 years of dealing with this. This is a brand-new family construction."
A 'helper' for Mom, Dad
Mackinnon started talking about ART when her children were toddlers. She often used simple stories about "Mommy and Daddy's helper." And over the years, Mackinnon — a therapist who helps parents talk to their children about ART and adoption — has added details.
When the twins, now 13, were about 6, Mackinnon revealed: "Mommy and Daddy are older parents. One of Mom's tubes broke down and would not carry the egg where it was needed. And we saw a doctor who helps families."
Her openness is common among many parents who use standard ART (involving the parents' eggs and sperm), with many parents developing a more relaxed attitude about talking to their offspring about the process.
However, couples who use donor eggs or sperm — now, about one in four IVF procedures — are more likely to remain silent.
In some ways, to tell or not shares the same emotional touchstones that faced adoptive parents in decades past.
"They have major concerns," said Linda Stamm, an Atlanta psychologist who specializes in infertility and adoption issues. "They are worried that it will seem very strange, that their children will feel different and be ostracized. It sounds so sci-fi and so removed from their nurturing, mother-father-child relationship. They want to make it more human."
Dr. Hilton Kort, co-founder of Reproductive Biology Associates, estimates that at least 70 percent of parents who rely on donor eggs, also known as gametes, never plan to tell their children about it.
Kort sees "little reason" why parents should share the true genetic makeup with their children, pointing out three key factors: The clinic carefully screens potential donors and only selects candidates with no family history of disease; the donor's identity is confidential; and the clinic even tries to match the physical characteristics of the donor with the parents.
While a medical condition later in life — such as the need for a bone marrow transplant — may force parents to reveal the secret, many doctors believe the chances of that happening are slim. And, they say, it's not a strong enough risk for disclosure.
Kort said, "The question is, do the parents keep the news to themselves and deal with it, or do the parents deal with the 17-year-old who wants to find the egg donor but can't?"
Talking about donors
However, Mackinnon believes keeping the information secret is a daunting task and a heavy burden. She envisions endless possibilities for potential conflict: Children could ask about their different eye color or needlessly worry about a medical link to their mother's breast cancer.
"Rather than getting caught up in the shame of it, we need to celebrate the diversity of how we are created," she said.
Stamm said parents can ease children's discomfort of not knowing their donor by gathering as much information as possible about the donor, such as hair color, freckles (or not) and favorite hobby.
Stamm wrote a children's book about egg donation after she couldn't find any such books on the market. Therapists, however, are careful not to push parents toward disclosure if the couple is not comfortable with that option.
"If you have a family of Ph.D. biologists, it is not going to be an issue [to disclose the truth]," said Dr. Robert Simmermon, a local psychologist who works with couples going through fertility treatments. "But if you have Uncle Homer looking at the child saying, 'You don't look like a test tube baby,' or someone who is judgmental saying, 'How could someone sell their sperm?' or if you have some religious conflicts, you could do more harm than good [by disclosure]."
Prospective parents at Reproductive Biology Associates and other fertility clinics in Georgia are required to meet with infertility counselors to explore the issue of disclosure as well as discuss any religious or spiritual struggles.
Typically, men have a tougher time disclosing the use of donor sperm than women do about the use of donor eggs, counselors say.
That hesitation is probably rooted more in humans' biological legacy than the reactions of individual men.
As Michael Murphy, an anthropologist at the University of Alabama, pointed out, women — even if they use gametes — still carry the child for nine months and can later breast-feed the baby. Men often do not have such easy physical connections — and if they reveal that they are not the biological father, some are afraid it will damage their relationship with their kids.
And some fathers worry that "they don't measure up," said Stamm. "Men's identity is wrapped up with passing on their lineage."
That stigma often makes them stay silent.
Disclosure is also complicated by the couple's spiritual life. Although most religions support standard ART, the use of donor sperm and eggs is more controversial.
For example, Reform Judaism generally accepts the use of donors. Conservative Judaism accepts their use as a last alternative, but Orthodox Judaism completely rejects such practices.
Jim Higgins, a pastor at Haygood Memorial Methodist Church in Atlanta, tells his members there is no difference between a child born to its biological parents, through donor egg and donor sperm, and a child who is adopted.
"Regardless of where the child came from biologically, the parent who raises the child is the parent," he said. "I would try to help them reframe [the issue] to say, 'We loved you so much that we went to great lengths to have you be part of our life.' "
Pat Johnston, author of "Taking Charge of Infertility" (Perspectives Press, $21.95), believes the concerns parents feel about sharing the fact of a standard IVF — involving the genetics of Mom and Dad — are based on the parents' frustrations and not the need of the children. She calls standard IVF merely "the mechanics" — not the weighty issue of IVF when it involves donor egg and sperm.
But Stephanie and Reece Fowler of Covington believe it is important to eventually tell their 16-month-old daughter, Sydney, about their five-year struggle to get pregnant and their use of IVF. She also believes her daughter needs to know about her medical condition that posed an obstacle to pregnancy.
"I don't want her to think she is a miracle baby, but I do want her to know how much we wanted her," Stephanie Fowler said.
Dr. Mark Perloe, director of Georgia Reproductive Specialists, believes that choosing to share is an individual choice, adding that what doctors think "is really irrelevant."
As IVF and egg and sperm donation become more common, he and others believe more parents will be comfortable talking about it.
"Fifteen years from now, people will likely be far more open about it," Simmermon said. "Our cultural process is behind the science."
At the Mackinnon home, they talk about IVF as casually as discussing dinner plans.
"I'm normal," proudly says 13-year-old Annelise Mackinnon. "I'm no different than anyone else — except I was just born in a petri dish."
"Annelise, you weren't born in a petri dish. You were conceived in a petri dish," says dad Bill Mackinnon. "You just love to say you were born in a petri dish," adds Leslie Mackinnon.
"Whatever," Annelise says with a smile.
HOW TO TALK TO YOUR CHILDREN ABOUT IN VITRO FERTILIZATION
The conventional wisdom is, you wait until the child can cognitively and developmentally grasp some of the complicated science, somewhere toward the end of the middle school years. But many therapists who work with infertile couples recommend the story begin when the child is as young as 3. Here are tips from Carol Jones, local therapist and a national board member of Resolve: The National Infertility Association.
• When the child notices pregnant women and starts asking where babies come from — sometime between ages 3 and 6 — Jones recommends introducing the thought of a "helper." (Parents are recommended to be together.) "I am so glad you asked, because we have a great story. We really wanted to be parents, and we got some good help. We had a nice doctor help to make sure we could get pregnant and be your parents."
For donor egg and donor sperm, add "a nice lady helper" and a "nice male helper." Then, Jones suggests showing photographs of the pregnancy and baby pictures.
• Then, when the child is between 9 and 13, learning about reproduction and asking more questions, here's an example for donor egg: "Remember I talked to you about getting help when we got pregnant with you? One person was a nice lady who wanted to help people have children. She gave us some of her eggs to help create you. We used her eggs and your father's sperm, and that's how we got pregnant."
• Regarding the level of privacy: It is fine to tell the child that this is something you have decided not to share with others outside the family. If the child wants to talk about it outside the family, talk about the issue together as a family. Ask the child: "Who do you want to tell, and why? Let's look at ways they might respond, because this is not the way all families are created. This is the special way ours was created."
News researcher Sharon Gaus contributed to this article.
HOW TO DECIDE
Carol Jones, a board member of Resolve: The National Infertility Association, and an Atlanta therapist whose practice is devoted to counseling couples grappling with infertility issues, says that telling a child about donor egg or sperm is not an option for some couples who are very private, or whose religious or cultural background opposes the use of third-party reproduction techniques.
"We want to talk about ways to handle conversations and situations which may occur in the future and give them things to think about in making this decision," said Jones. "We don't want them to leave the office in angst and tears thinking, 'This is what I am supposed to do.' "
In deciding whether to disclose to a child how conception occurred, Jones asks couples to consider the following:
• Are they by nature generally open or closed people about sharing personal information?
• If they were born with donor egg, donor sperm or donor embryo, would they like to know? Why or why not?
• Do you think a child has a right to know as much information as possible about their lives?
• Do they believe it could be damaging if the child eventually finds out, such as by accident, by seeing the parent's medical record?
Jones said that if a couple decides against disclosure, they should find out as much medical information as possible about the donor to weave that information into the family medical history.
• "Phoebe's Family" — A story about egg donation, for ages 5 to 10, by Linda Stamm, an Atlanta psychologist who specializes in infertility and adoption issues ($9.95 at www.tapestrybooks.com).
• "Let Me Explain" — A story about donor insemination by Jane Schnitter (Perspectives Press, $14).
• "Mommy, Did I Grow in Your Tummy?" by Elaine Gordon ($9.95 at www.tapestrybooks.com).
ON THE WEB
• For more information about talking to your kids about in vitro fertilization and other infertility issues, go to Resolve: The National Infertility Association at www.resolve.org, or the Georgia chapter of Resolve at www.resolveofgeorgia.org.
• The International Council on Infertility Information Dissemination, www.inciid.org.
• To participate in a study, "The Disclosure Decision After the Use of Gametes" (no individual identities will be used in any reports or publications), call 415-502-6491.