My experience at summit

written by brianna evans

my personal experience attending Momma’s voices champions for change maternal health advocacy summit

Summit Purpose & Themes

What does being a Champion for Change mean? That’s the question I asked myself when I clicked the link for the event invite and signed up to attend the 2019 MoMMAs Voices Champions for Change Summit held in Houston, Texas. MoMMAs Voices is a national coalition of patient organizations with lived experiences in different conditions or aspects of maternal health care, who use their collective voice to reduce maternal complications in pregnancy and postpartum, with the goal of eliminating maternal mortality and morbidity in the United States. Executive partners include the Preeclampsia Foundation, the AFE Foundation, National Accreta Foundation, 2020 Mom, Every Mother Counts, Shades of Blue Project, and the Black Women’s Health Imperative. The Summit was geared towards empowering survivors, patients, and those who represent them to get involved in the maternal healthcare movement by learning to use our representative voices and stories to affect change. 

I’ve had a deep draw towards advocacy and supporting other women since I delivered my last baby and survived a life threatening hemorrhage, complications of severe placenta percreta, and my son’s extremely premature birth. After my recovery, I got involved organizing online and local support groups for women who have suffered similar circumstances. Along the way, I met families of women who hadn’t survived what I had. Because of them, I decided that I wanted to do more in the fight to improve maternal healthcare for other women and their families. I wasn’t sure how to become involved or share my message effectively, so the weekend of October 18-20, I headed to Houston to find out. I was excited to learn how to be a champion for change.

When I arrived Friday night for the Summit opening social held in the beautiful Marriott hotel, I was instantly taken in by the lovely decor and inviting atmosphere. I made my way to the Summit check-in table and was given a name badge to decorate. After choosing an assortment of descriptive ribbons which highlighted aspects of my personality and survivor story, I stepped into the doorway of the social and took in my surroundings. Right away I noticed the uniqueness of everyone’s badges, and yet I was surprised at the commonalities that so many of us shared! Several women walked over to welcome me who were there representing different foundations and organizations, but all with the same purpose- making a difference in maternal health care and empowering others to do the same. We spent time getting to know each other and sharing our stories, and it was cathartic to find myself amongst a group of women who understood what I had been through and had the same desire to impact change. I knew I was in the right place to learn from so many amazing people, and I felt inspired by their confidence and encouragement. 

Summit Highlights & Key Takeaways

Summit kicked off with some great presentations on different areas of maternal healthcare that survivors and patient advocates like myself could get involved in, and broke down how to better understand all the acronyms, charts, and lingo for some promising on-going initiatives that are moving through our country’s healthcare system. We attended very insightful classes on sharing your survivor story effectively, and using your representative voice in local and state capacities. We learned how to navigate post traumatic growth and find peace in our experiences, and we were privileged to hear from prominent figures in maternal healthcare, like Dr. Lisa M. Hollier, the past president of the American College of Obstetricians and Gynecologists, who was the keynote speaker at the Champion’s dinner.

How can a survivor, like myself, use their representative voice? Thinking about the picture as a whole felt a little overwhelming at first, but as I listened to the excellent presenters who have been making great strides in patient advocacy and influencing healthcare initiatives, I learned that being a champion for change can start by taking small steps. Getting involved in our communities through blood drives and other awareness opportunities, as well as participating in local support for patients, survivors, and their families, is a good way to start and can really make a difference. Joining committees or programs at our local hospitals is another way and can give us the opportunity to share our patient experiences to affect changes which could lead to better outcomes for future patients. NAF co-founder Kristen Terlizzi shared tips on how to pair your story and experience with maternal health quality improvement initiatives as part of a panel discussion on widening your lens. Other opportunities could include becoming involved in state or county programs like Perinatal Quality Collaboratives and Alliances for Innovation on Maternal health initiatives, where sharing patient and survivor stories could potentially affect changes in policies and programs on a wider scale.  

One of the most helpful classes I attended at Summit was learning how to share our stories effectively. As a survivor of severe placenta percreta, I often try to talk to others about what I experienced. It’s sometimes difficult knowing how much of the story and what details I should share, and I wonder if I’m getting the message across that I want others to take away from the conversation. After a great presentation about how to balance details with emotions and the takeaway you want people to remember, we were able to participate in an exercise where we practiced writing down our story in 75 words. It was difficult at first, but after a few tries I ended up with a version that I felt good about. And more importantly, I feel much better prepared to share my story in the future and use it in a way that will have greater impact on my audience. 

During two jam-packed days of Summit sessions, we had the opportunity to attend excellent panel discussions from leaders in the advocacy community as well as breakout sessions on a variety of topics. I chose a class on leveraging the media to share your story, which was a fascinating and informative presentation on how to pitch your story, who to talk to, and the best times to reach potential media outlets. We were given great tips on engaging your audience and increasing the potential for follow-up stories. In another class I attended, we divided into groups and wrote sticky notes about some of the positives and negatives in each of our individual experiences. Then we grouped all the notes into categories, and it was amazing to see how common themes took shape.

One of the most impactful classes I attended was a presentation on how hospitals can use simulation for quality improvement training to better prepare doctors, nurses, and medical staff to quickly and appropriately respond to severe maternal events. We had a rare opportunity to witness a shortened version of an actual simulation on postpartum hemorrhage, and it was a heart-pounding and very emotional experience for most attendees in the room. We learned that simulation training can reduce response time and error in severe maternal events, increasing the percentage of good outcomes. I got so much out of each of the breakout classes that I chose, I wish there would have been time to attend them all! 

Accreta Community

While the classes and presentations were all incredible, one of the highlights of the weekend was meeting in person so many friends from the accreta community, as well as making new friends from several other maternal health organizations and advocacy communities. There’s nothing like spending time with, talking to, and sharing a hug with other like-minded women who have similar stories and who understand what you’ve been through on a different level than those who haven’t experienced something similar. Outside of the sessions, we shared lots of laughs, a few tears, and many delicious meals catered by the hotel. We even got to enjoy moments of peaceful downtime together in a lovely meditation room filled with soothing scents, inspiring quotes, and restful comforts.     

Bernhardt family 

Another highlight was meeting and talking to the Bernhardt family at the Champions Dinner on Saturday night. Their daughter and sister, Lauren Gunderson, passed away from complications of placenta percreta 6 years ago, leaving behind her family and 4 young children. Since then they’ve been involved in promoting awareness, education, and support for other families who have experienced the same loss. It was a privilege to have them join us at the event and share stories of their beautiful Lauren, many heartfelt hugs were exchanged with this strong and dedicated family. 

Awareness Kits

Sunday afternoon, after the sessions concluded and before we said our good-byes, many women from the accreta community gathered to help with a service project for National Accreta Foundation. We put together accreta awareness kits that patients can sponsor and donate to hospitals and doctors around the country that are leaders in accreta care. The kits included rack cards that can be handed out to accreta patients, which will give them resources for information and support. The time was also spent bonding over the commonalities of our stories, learning about each other’s families and interests, and making plans for future projects and collaborations. 

As I sat in the airport Sunday evening waiting for my flight, a myriad of emotions filled me. I felt inspired, lifted, and encouraged. Inspired by all the amazing Champions I met over the weekend and the dedicated work they’ve been doing. Lifted by all the wonderful sisters who I was privileged to spend time with; it was so healing to share such a raw part of myself. And encouraged that I now have better tools and more confidence to move forward and join the ranks of the Champions for Change- together we can help make maternal healthcare better for all women. It was an incredible weekend, and I already can’t wait until next year’s Summit!

Come join us this year at champions for change summit

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