The evening in New York City last week was billed as the start of a new movement, one sparked by infertile patients trying to give voice to the dark side of fertility treatments. "We want to make infertility an honored subject, free of stigma," said Irina Vodar, a documentary filmmaker now working on "The Cycle: Living a Taboo" about her own life on the IVF treadmill.
"It's been an emotional roller coaster," said her husband, Eddie Sullivan, a big guy in a slick gray suit whose tough demeanor broke down as he described their four years of fertility treatments. They stopped treatment a year ago, and have been trying to decide what to do next. Try another cycle? Finish the movie? Think about adoption? They originally thought of adoption as "the easy way out," Sullivan said, but now they're not so sure. "We just want to be parents," he said, his voice breaking.
Vodar called her film a work-in-progress, and said the public forum was the next stage in its development. She said she wanted others to be able to tell their own versions of "the story of reproductive technology without the baby in the arms."
There was a clear need for this burgeoning solidarity. "When you end fertility treatment you're in for a rough landing," said Pamela Mahoney Tsigdinos, who went through 11 years of treatment before stopping a decade ago. "There's no languge, no protocol, no casseroles. You are left to endure the impact alone."
It was a long night. While Tsigdinos and the others had touching, heartfelt stories—touching even for me, possibly the only person in the audience of 100 or so who hadn't gone through the infertility roller coaster myself (my two daughters were conceived relatively easily when I was in my twenties)—after an hour and a half, the stories took on a deadening similarity. Still, the whole point was giving everyone a chance to tell hers, with its particular heartbreaks and its unique twists and turns.
And there was one aspect of this all that slowly dawned on me over the course of the evening: the idea that while I didn't have an infertility story of my own to tell, one day my daughters might. Like so many other ambitious, educated Millennials, they think they can delay choices about whether to have babies until long after their careers are settled. I'm not so sure—and neither was the physician on stage that night, reproductive endocrinologist David Barad of the Center for Human Reproduction in New York.
The meaning of family planning over the past 40 years has been the freedom not to conceive, he said, through access to better contraception and safer abortions. "But true family planning means knowing when you can have a baby," he said. "And the biggest predictor we have of fertility problems is a woman's age."
Barad gently suggested that we might need to "restructure society" in a way more sensitive to the true nature of a woman's most fertile years. How about this pattern, he said: "Go to college, have a baby, then you can have a career and your mom is there to help take care of the baby." As a potential grandmother who would be happy to help take care of the baby, I liked this plan -- but I don't see it happening any time soon. And the suggestion was never picked up again by any of the women on the panel or in the audience.
The biological justification for such a cultural shift is strong. As Vodar pointed out, the failure rate in fertility clinics goes up dramatically as a woman ages—something that most young women just don't seem to believe. In the U.S., she said, the failure rate per IVF cycle is 58% for women under 35, 68% for women 35 to 37, 78% for women 37 to 39, 88% for women 40 to 42, 95% for women 42 to 44. One might wonder why fertility clinics even offer IVF on women in their 40s, given the incredibly long odds against ending up with a baby. One might also wonder why they're freezing the eggs of women in their late 30s (the average age of egg freezing in the US is 37.4), if they know that these women won't be coming back to use the eggs until their 40s, when the odds of success are vanishingly small. Maybe the fact they can charge about $15,000 for the service has something to do with it.
It was hard to know just how to react to these sad stories. One of the first audience members to make a comment did it the wrong way for sure. She stood up to deliver a lengthy monologue about how wonderful adoption is, and how gratified she has been for the past 23 years as the mother of a beautiful daughter from Singapore, because obviously being a parent is the most amazing experience you can have, the path to true fulfillment. Not helpful, as Vodar pointed out. "People are always telling us, try adoption, try adoption, try adoption,'" she said tactfully, sitting primly on stage in a pretty blue dress. "But that's not the point."
The truly compassionate way to respond came when a young man in the audience stood up to say that he and his wife had just gotten off the IVF treadmill after several years of failed cycles, and they were trying to figure out what to do next. How do we get throught this? he asked. Before giving any advice, Tsigdinos, author of Silent Sorority: A Barren Woman Gets Angry, Busy, Lost and Found, took the microphone and said something that I think only a fellow-traveler in the brutal world of infertility can know to say: "I'm sorry for your losses."