A new documentary titled "Don't Talk About the Baby" is believed to be the first to address pregnancy loss, stillbirth, and infant loss.
The film was released Oct.15 to honor International Pregnancy and Infant Loss Remembrance Day. October is observed as Pregnancy and Infant Loss Awareness Month, which President Ronald Reagan made a national observance in 1988.
"Don't Talk About the Baby" was created by two women who experienced miscarriage and wanted to break the stigma around loss. They collected more than $50,000 in crowdfunding and came to Seattle to interview several people, including Annie Kuo, an infertility ambassador with the organization Resolve, and Lora Shahine, a reproductive endocrinologist currently practicing at Pacific NW Fertility and IVF Specialists in Seattle.
According to the CDC, one in four women in the United States experience a miscarriage sometime in their lives. About one in 160 deliveries is affected by stillbirth -- each year about 24,000 babies are stillborn in the states and 11,300 babies die within their first year of life. Pregnancy loss does not mean a person is infertile, though recurrent pregnancy loss falls under the infertility umbrella.
Take 5: How did you overcome stigma and loss?
Kuo: I just remember how alone I felt after my Christmas Eve miscarriage in 2009. I didn't know anyone at that time who had lost a pregnancy, and I didn't know who I could share my loss with that would understand the emptiness. So, I overcome any thoughts of abandoning the cause by exercising empathy and compassion. If I had pursued medical treatment before having my daughter without a community to fall back on, it would have been devastating. I persist because I see that the resurrected Resolve support groups in Seattle are making a difference in people's lives, giving them hope, community, and resources for the journey.
Take 5: Who are some of the people you look up to in your field and why?
Kuo: I look up to the creators -- the authors, filmmakers, artists, bloggers, and family-building advocates -- who are telling the stories of the infertility community. They are creating platforms to bring infertility and pregnancy loss out of the shadows and into the light and creating ways for people to feel less alone. Even if you don't come to a support group, maybe you can feel less alone by watching a movie or looking at infertility art. Besides this film, "Don't Talk About the Baby" there have been a few other movies in the past year and a half that address fertility issues and treat them sensitively: "One More Shot," "Vegas Baby," and the recent "Private Life."
Dr. Shahine: My mentor at Stanford, Dr. Ruth Lathi. I trained with her while she was opening up the Center for Recurrent Pregnancy Loss at Stanford and learned so much about the science and importance of collaboration in the field of recurrent miscarriage.
Take 5: Talk about a time you failed, but triumphed in the end.
Kuo: When I lost my first pregnancy in 2009 at 14 weeks. That was a gut-wrenching time, and I lost my innocence after the miscarriage. It took a while to relax into my second pregnancy, but eventually, I exhaled when I was very obviously showing and my daughter was growing well and healthy. I finally realized, "This is really happening!" She is now in first grade, and I consider her my miracle. We conceived her spontaneously after a doctor recommended IVF. When I attempted egg freezing a few years later, without success, that's when I realized just how lucky I am to have my daughter. I may not have had her-- or any genetically-related child -- with IVF.
Dr. Shahine: So many times. It's persistence that keeps me going.
Take 5: How is what you're doing innovative?
Kuo: I am an advocate for the local infertility community, both in raising awareness through media relations and special events, but also on the legislative side. I have trained family-building advocates in Washington, DC for the past two years on Infertility Advocacy Day by writing online training materials and coaching at the podium. By starting the first resurrected Resolve support group in Seattle, I have seen the network expand since 2015 to 15+ groups from Bellingham to Gig Harbor to Tumwater. I'm now connecting the hosts across the state so we can build a strong community with these shared experiences of hope and resilience through infertility and loss.
Dr. Shahine: I am an advocate for couples who feel broken by miscarriage. I want people to remain hopeful and persist in their journey to parenthood. There are providers that aren't supportive and Dr. Internet can be a deep hole of poor information. I want people to learn more, be advocates for their own care, and support each other through the grief of miscarriage.
Take 5: How can people get involved or help?
Kuo: Get educated on the facts. Go beyond the cliches of support and really listen. Remember people's losses more than one time -- when we remember the lost hopes and dreams, when we give a name to it or otherwise acknowledge the loss, we honor our loved ones. More people should talk about loss. It's very common but just not talked about. As mentioned in the documentary, our society doesn't have a narrative script for how to talk about miscarriage and stillbirth. That's because we haven't worked it out by talking through it. We need to talk about these experiences more.
Dr. Shahine: Learn, share, support each other to decrease the stigma and isolation surrounding miscarriage.
Dr. Shahine has also written books on recurrent miscarriage - Not Broken: An Approachable Guide to Miscarriage and Recurrent Pregnancy Loss and Not Broken Illustrated: A Gift for Those Who Have Suffered Pregnancy Loss