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(WOMENSENEWS)–What they expected were miracle babies.
Instead, they got endless cycles of fertility treatments, bioethical dilemmas and ongoing emotional trauma. Not one left the hospital with a baby in their arms.
Women and couples at “The Cycle: Living a Taboo,” a public forum on infertility co-organized by filmmaker Irina Vodar as part of her upcoming documentary by the same title, recently spoke about the shame, grief and isolation that followed their inability to bear children in an age of high-tech conception.
The Sept. 27 forum provided an outlet where couples struggling to conceive using the latest medical methods could ask questions and listen to powerful stories from those for whom technology failed.
“The more extensive the intervention when trying to have a baby, the greater the sense of shame when it doesn’t succeed. Then when medicine fails us, we feel doubly broken,” Pamela M. Tsigdinos, the forum’s co-producer and author of “Silent Sorority“, a memoir chronicling her decade-long struggle to conceive, told Women’s eNews in an interview.
In their talks, Tsigdinos and Vodar emphasized the importance of solidarity among infertile women in an age when female bonding so often occurs around motherhood. They addressed why an infertility diagnosis is particularly devastating to “Generation IVF;” the first generation of women to grow up with the reproductive freedom to delay pregnancy and have access to in vitro fertilization. Like Tsigdinos and Vodar, these women were raised to believe that science can surpass Mother Nature in the tricky dance of conception.
Combined with the media’s glamorization of pregnancy, motherhood and reproductive anomalies — think Octomom, women giving birth to their own grandchildren and celebrities showing off baby bumps well into their 40s — these beliefs and messages create “false expectations for the average woman struggling to conceive,” said Vodar.
More Failure Than Success
An estimated 7.3 million women and their partners in the U.S. experience infertility, or 1-in-8 couples, according to the U.S. National Survey of Family Growth. For women, age is the most influential factor in predicting fertility, as evidenced by the Centers for Disease Control and Prevention‘s 2011 Preliminary ART Success Rates. It shows that women younger than 35 have a 40 percent chance of giving birth per fertility treatment cycle, while women 44 and older have only a 1 percent chance of giving birth per treatment cycle. Most of these treatments take place in women between the ages of 30 and 39. Today, more than 1 percent of all infants born in the United States every year are conceived using medical technology.
Yet assisted reproductive technology fails more often than it succeeds. Global statistics from 2007 indicate that overall, there’s a 27 percent success rate — meaning a pregnancy that results in a live birth — from a single treatment cycle.
And undergoing more treatment cycles doesn’t improve the chances of getting pregnant. If a woman has a 5 percent chance of getting pregnant, her odds are just as low during the 20th cycle as they were for the first one. Some women at the forum referred to starting from scratch each cycle as a Sisyphus-like task.
When she began trying to conceive at age 40, award-winning journalist Miriam Zoll had no doubt modern technology could help her get pregnant, despite a previous diagnosis of endometriosis.
At the forum, Zoll emotionally chronicled injecting herself with hormones month after month, yet failing to become pregnant. By her fourth in vitro fertilization trial, she described entering “the fertility junkie zone.” It was a place where fear, denial and shame kept her in treatment, despite her extremely low odds of becoming pregnant.
“I was held hostage by science,” said Zoll, who chronicles her fertility struggles in the book “Cracked Open: Liberty, Fertility and the Pursuit of High Tech Babies.” She describes how due to the hyper-marketed, unregulated U.S. fertility industry and the idealization of reproductive technology, women are pressured to continue fertility treatments at all costs. (Although there is a federal mandate for fertility clinics to share their success rates, there are no fertility industry standardized protocols.)
Pressure to Keep Trying
The pressure to try, try and try again was common among women who spoke at the forum. For some, continuing fertility treatments gave them hope. Yet for others, the never-give-up mentality kept them in constant limbo, unable to move on with their lives.
For Zoll, giving up on treatment initially felt like failure. Yet it was only after accepting her infertility and allowing herself to grieve the loss that she was eventually able to consider other options. Zoll now has an adopted son.
Unlike the loss of a live child, there’s no protocol for grieving a child that never was, said Marni Rosner, a psychotherapist specializing in trauma and infertility. She spoke at the forum about her own fertility struggles and the difficulty in defining what is lost along with the ability bear children.
“It’s the loss of a planned and hoped for future, of creating something with one’s partner. It’s a social loss and crossing a threshold into adulthood,” said Rosner, noting the correlation between “reproductive trauma” and posttraumatic stress disorder.
Tsigdinos, who had her first fertility workup at age 29, noted that well-intentioned friends and family members often exacerbate the sense of loss with statements like “just keep trying” or “you’re still young” when fertility struggles are confided.
When Tsigdinos eventually stopped fertility treatments without becoming pregnant and shared her story in her memoir, she received emails from women around the world. Some told her she was bitter or that she didn’t try hard enough. Many more wrote to thank her. After years of feeling like a “fringe dweller,” opening up gave her sense of solidarity and normalcy. She hoped the forum would do the same for other women who felt silenced and stigmatized.
“I found myself in tears,” she said of the night before the forum, when many of the women gathered for the first time. “Not because I was feeling sorry for myself, but because I was so relieved and overwhelmed that these women were speaking with honesty.”
Alizah Salario is a writer based in New York City. Her work has appeared in Slate, The Daily Beast, The New York Daily News, The Los Angeles Review of Books and elsewhere. Follow her on Twitter @Alirosa.
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Thank you for writing this. Coming to terms with infertility and trying to figure out how to grieve over it can be very lonely and confusing. I’m glad to see that there are efforts to gather women around this issue. I always felt guilty that I “didn’t try harder” — i.e. fertility drugs, IVF, etc. After reading these stats, I feel better than I didn’t go all out. But it’s still difficult to come to terms with a loss of a baby that never was.