Monica: Thank you so much for chatting, Kiley! Your non-profit organization Return to Zero: HOPE is doing incredible work with families who have experienced stillbirth or loss during pregnancy. Can you share with us what led you on this path?
Kiley: As newlyweds, my husband and I were very excited to be pregnant with our first child. We envisioned a natural birth free from unnecessary medical intervention. The pregnancy was typical until—at 35 weeks—I went into early labor.
At the doctor’s office, I discovered that our son, Norbert, had already passed away, and he was born still the next day, July 12, 2005. The cause of his death was a liver cyst that had grown rapidly in the third trimester. Not only was our vision of a natural, non-medical birth experience gone, but losing their first child in this shocking and completely unexpected way shattered our lives.
We did have the opportunity to spend some time with our son at the hospital. However, the experience with the medical professionals was appalling, the staff was wholly unprepared, and the resources were sparse.
Monica: Tragedies are often life-altering and completely change our perspective in how we see the world. How did this experience change yours, and inspired you to move forward?
Kiley: When our son died, we thought we were the only people to experience a stillbirth because it is a taboo topic. My husband, a filmmaker, felt compelled to make Return to Zero and tell a story, our story about stillbirth, on film because it hadn’t been told before.
The response to the film from other bereaved parents was incredible. People around the world who had experienced the death of their baby yearned to be seen. We heard from so many of these parents that because this movie existed, they felt validated and less isolated. Even though we each have a unique experience, there are universal themes that connect us all.
Monica: What an incredibly moving and powerful way to support and connect with other parents who have been through such a difficult experience. When you look back, what do you wish you had known or had been given my support around?
Kiley: Our experience in the hospital severely lacked guidance from the hospital staff on what to expect (you have to deliver your stillborn child) and how to spend the only time we would have with our son (there are many ways to parent your child and making memories are an essential part to integrate this experience). Looking back, I wish they would have guided me and given me ideas of what other parents have found helpful in this situation.
Part of why I started Return to Zero: HOPE is to educate healthcare providers about better ways to interact with and care for their patients. We hope those who experience this loss in the future have better treatment and support. The time and care received in the hospital is crucial and impacts one’s mental health in the future.
Monica: The human experience can often be missing in the health care setting, so it’s so incredibly needed to focus on connection and support during times of grief. How has your own experience continued to influence how you help others through your work?
Kiley: In the first nine years of my grieving journey, I turned inward and suffered alone. Part of that is my personality as an introvert, but I had no guidance on what to do with this unimaginable pain.
When the film was in production, we began hearing stories from other grieving parents. I realized that there was a community of baby loss parents out there and wondered why we hadn’t found them.
The idea to start a retreat began in 2014, around the same time the film was released, with the desire to create community among bereaved mothers, nurture the women, and share positive ways to cultivate relationships with their babies. There is power in a tribe of women who have walked through the flames – they know you intimately and you can be your true self. Experiences with these women in a retreat setting has taught me about living life whole-heartedly. Life is filled with joy and sorrow, love and loss, and through that we need to be able to find meaning and purpose.
Monica: When you’re doing such deep work, it can be emotionally heavy. How are you able to keep your own health and happiness in perspective, and what helps you continue to thrive in life?
Kiley: My biggest challenge is practicing what I preach about self-care. I am passionate and want to help others, but I have to prioritize myself (which is not easy!). I am not much good to my family or others if I am tired, sick, or cranky.
Through my own personal experiences, I suffered a lot and felt very alone and isolated. I have found that it is liberating to connect with other people going through something similar and know that you are not alone.
Learn more about Kiley’s non-profit organization at https://rtzhope.org/.