Mother, Birth Justice Advocate, and Organizer
– Hope
What started me in this work was the trauma that I went through giving birth to Kyndahl, in 2014. My birth with Kyndahl was traumatizing. Sadly, it didn’t stop there; I later gave birth to Kingston and experienced more trauma.
Before that, in 2003, I had a beautiful birthing experience with my oldest daughter, Myrai. I had a supportive doctor and an amazing hospital care team. My family and everybody I loved was there. I cried the moment I saw her. It truly was an unforgettable experience from beginning to end. Going from that birthing experience to these recent experiences where suddenly they were like “You’re not going to stay pregnant for long; we need to take your baby right now!” was traumatic.
Being the person I am, when I say there is something wrong, it’s wrong. I can’t sit by and watch harm happen and not do anything about it. I didn’t know preterm birth was an epidemic. I didn’t understand that this was something affecting my community. All I knew was that something was wrong. I stepped into this work with the thought that I would never let it happen to another woman and that is the reason why I am still in it.
The second time around in the NICU, it didn’t matter that I knew what my birth was supposed to look like. That I was in the same hospital and I knew how things worked this time. I had the research, data and trails of birth advocacy behind me. I was still Black while giving birth in this facility. I literally had to pass out my bio to all the hospital staff because they wanted to tell me that giving birth at 32 weeks wasn’t going to make a difference and that I didn’t know my body.
I was like, “That’s a huge difference in development between 32 and 35. There’s a huge developmental difference between 32 and 37 weeks. Even though he does have a higher statistical rate of survival at 32 weeks, there’s a difference in the time that he will spend in the NICU. There’s a difference in what my breast milk will look like from 32 to 35.”
This most recent birthing experience has me fired up and reflecting on the long-term vision of birth justice. We’ve seen the effects: We’ve done a phenomenal job of giving women the equipment and the tools for a good birthing experience. I had a good doctor, we had a plan, and I was looking for promises. I already had the knowledge, they didn’t give me any new knowledge, so why was I still leaving with trauma?
Preterm birth still exists. It doesn’t exist on paper, but it exists! Preterm birth is not considered a condition that will qualify for federal funding or disability insurance or disability care. Even as these babies grow up, some will catch up in weight, but some kids go to school and some grow up with minor health, learning and behavioral issues. Instead of seeing them, giving them the life and support they need, we push them into the next system. We believe this epidemic stops after they leave the NICU. But the truth is we never stop rallying for them after we give birth.
Preterm birth is a life journey, not a moment.
It doesn’t go away or clear up when I leave the NICU. It is not just the trauma during the birth that we experience, but sometimes the experience we go through years after, because it doesn’t exist on paper. The most hurtful part of my birthing experience was not necessarily what I went through while in labor — because I know in the end that I was going to recover since I’ve been there and done that; I knew I was going to make it — the hardest part was watching the women next to me go through and couldn’t help her navigate through health system bureaucracy.
After all these years of being in this work, there are still women who don’t have guaranteed income while they are sitting on the bedside of their two-pound babies. Trying to give their babies the best, but not understanding the money game and the ways that hospitals will cut corners and push formula instead of donor breast milk. These women don’t have steady and promising policies that will guarantee them their job as they try to fight for their child’s survival. They still, after two months of giving birth to a child, have to go back to work. With no time to heal and no time to process what’s happening. Why? Because your family medical leave doesn’t cover it and preterm birth doesn’t exist on government papers.
This work is not just capturing the stories. Because we have heard enough stories. It is actually doing what is required by the stories. Actually putting into action what you have been heard for years. It doesn’t mean nothing for me to keep telling my story, if it results in the same outcome. You are causing more trauma by making people relive it. I want to stop making women relive it and start allowing women to really live through it.
I wouldn’t advise [expectant mothers] to do anything different. When I say that, I mean we get it. It’s not the people giving birth that need the advice. It is the people and institutions who are serving those who give birth that need the advice and deep reflection. We have everything that we need and everything that we need to know: We are well equipped, we know how our body ticks, we know how we breathe, and we know what we want our experience to be like. What we believe is true. It’s not us.
The people who are giving life get it. We get it! It is the people on the other end that are not listening and that have not humbled themselves. It’s the people who are so equipped with the book knowledge and years of on-the-job training, but ignorant of their own bias and trauma. Broken by meeting someone who didn’t want to listen or follow along.
For those people, my advice would be, every birthing experience is a reset. Every time you come into a new person’s space, that is a new experience. You don’t bring in “I remember with my last patient that…” when you see me. My name is Hope. This is my life. This is my birthing experience now.
I am a big policy person. Change and harm will continue until we start creating policy that really reflects lived experiences of the people being harmed. We need to tear down these institutions and redefine community.
I saw the public sample modules for the anti-bias training that were recently legislated. I remember the scenario of the Black woman losing her life. Clicking through scenario after scenario, I could see myself in each of those moments possibly living out her outcome, but is that the experience of providers? This tells you that the computer-generated scenarios don’t work. Why? Because we were not calling it out and requiring people to face the truth. We are going through the motions of change, but we’re not requiring reflection and accountability.
Racism and structural racism aren’t friendly or comfortable terms, so we instead settle for birth equity. However, our birth outcomes are not equal. There is no change until we address the fear of death while giving birth in tainted hands.
We need to call medical racism and violence out! Acknowledge the experience, have the courage to change the policies to stop it, and then we need to penalize those who wish to continue. It is not going to change until you know my name, you can’t harm me and keep going. You can’t move on after you harm or kill me. The structures are not going to change until I can go tell my story and it ends there for every woman. The structures are not going to change until medical hospitals have to rectify the trauma they cause every time they violate me, my community and my birthing place. We have policies for victims of violent crimes; we need to move forward with victims of medical crimes. Because it is a crime for any person to go into a place and be traumatized by the people who are supposed to heal you.
