Holidays can be a time for family gatherings and warm memories, but for Annie Kuo, they have also become a reminder of loss.
On Christmas Eve 2009, Kuo invited friends and family to a party at her home in Anaheim, California. She had planned to announce her pregnancy, but discovered it was not viable at a doctor’s appointment weeks before.
Just before the party, Kuo felt intense contractions and cramps, she said. She excused herself and headed upstairs, where she experienced a miscarriage at 14 weeks of pregnancy.
“It was horrific,” Kuo, 40, told NBC News. “I have more sensitivity over folks facing infertility over the holidays. It marks the passage of time when holidays roll in, and it’s another year when I remember that searing pain and devastation of that loss.”
Kuo tried to get pregnant again immediately because she had heard stories about couples conceiving easily after a miscarriage. But after a year of trying, she and her husband had no luck.
On the suggestion of a friend, Kuo made an appointment at a fertility clinic after moving to Seattle in 2011. She received an infertility diagnosis and was told she was on an accelerated track to menopause. But while waiting to go over additional test results with her doctor, she got pregnant again without treatment. While Kuo was grateful for another chance, she said the experience was isolating.
Today the mother of a 6-year-old, Kuo is sharing her story to help make sure couples dealing with infertility don’t have to go through what she did.
In 2015, she founded an infertility support group and currently co-hosts the group with help from the nonprofit RESOLVE, The National Infertility Association.
Kuo’s efforts include planning guest speakers and community gatherings. The support group discusses topics like the challenges of conceiving after already having children, fertility nutrition, men’s fertility health, and fertility yoga, Kuo said. In the past, she has also volunteered on Infertility Advocacy Day to lobby Congress for family-building legislation, including making coverage for in vitro fertilization (IVF) permanent for veterans and reinstating the adoption tax credit.
“Sharing my story gives a voice and face to the disease of infertility,” Kuo said. “It encourages people who are struggling that they are not alone and empowers others to open up to loved ones.”
STIGMA IN ASIAN-AMERICAN COMMUNITIES
Infertility in women under the age of 35 is defined as the inability to achieve or sustain a pregnancy in 12 months of unprotected intercourse, according to Dr. Eve Feinberg, assistant professor of reproductive endocrinology and infertility at Northwestern University Feinberg School of Medicine.
Dr. Victor Fujimoto, the director of the IVF program at the University of California, San Francisco, said couples and women of East Asian descent wait considerably longer before they consult a doctor about fertility and are much less likely to seek early intervention when they’re having a problem getting pregnant.
“When we looked at our population of Asian patients, 40 percent or more were delayed in speaking for at least two years after their problem began,” Fujimoto said, citing a 2007 study he co-authored.
He noted that there are social and cultural factors that may play a role in access to fertility care in the Asian population and that Asian-American women in general have lower pregnancy rates after IVF treatment than white women.
After conceiving her daughter, Kuo wanted to preserve the chance to have a second child, opting against IVF in favor of an alternate fertility treatment. But while she consulted eight doctors in five states and tried several cycles of treatment, the attempts were unsuccessful.
Devastated by the news, Kuo said she decided to use that opportunity to explore other ways to build a family, including completing foster parent training and exploring adoption.
In 2015, Kuo came across a video about Infertility Advocacy Day posted by RESOLVE. She felt like she had an opportunity to channel her energy and frustration into something meaningful. After some encouragement from doctors and community members, Kuo decided to start a support group, recruiting members of a fertility book group she had hosted before.
Kuo believes there is a stigma attached to fertility issues within the Asian-American community, and also a pressure to conceive at a certain age, citing her own personal experience.
“People in Asian communities often are very family-oriented so elders, peers, and in-laws expect you to reproduce,” she said.
She noted that a generation gap and lack of understanding can exist unless elders they have also gone through an infertility experience or procedure, adding that in childbearing, a lot of the blame is often placed on women.
She said initially she didn’t reveal her infertility diagnosis to her family fearing some might not be supportive, but today, she has their backing.
“I’ve also had many people in the informal, extended Asian family network that have said, ‘What did you do?’ upon hearing about my miscarriage,” Kuo said.
Dr. Kathleen Lin, a Seattle-based reproductive endocrinologist infertility specialist, stressed the importance of culturally and linguistically appropriate services for patients, including those seeking fertility treatment.
She said that when she first started her practice, she learned how to speak Mandarin in order to communicate with some of her patients.
“Technically there’s still some limitations but a majority of communication is in Chinese and that helps them feel less alienated, to be able to do communicate,” Lin said. She estimates that approximately 30 to 40 percent of her clients are Asian American.
Some of her patients seem to have misconceptions about fertility and often have a fear about pregnancy, Lin noted. Part of the fear, she added, may stem from a lack of understanding about the process or previous lack of success.
“There’s a sense if you go to a fertility doctor, something is wrong with you,” she said.
Kuo hopes her future projects will help destigmatize conversations about infertility. She’s in the initial stages of producing a short documentary to be submitted to the Seattle Asian American Film Festival to raise awareness about infertility and its stigma, she said.
“Organizing awareness projects, advocating for family-building legislation, and starting support groups have been another way of giving birth,” Kuo said. “These projects and groups are like my babies.”
CLARIFICATION (Nov. 3, 2017, 7:10 P.M.): An earlier version of this article stated that Kuo underwent fertility treatment because she wanted to have a second child. Kuo says she wanted to preserve the chance to have a second child.