Trigger Warning: This blog does contain descriptions of distressing and traumatic birth experiences. The following story was written and approved by Paige Rohe, MPH, Founder of “The ROBIN Project.
As we got ready for my daughter Eva’s birth – we thought we had everything covered. The crib was built, the baby clothes were put away, and we had taken a birth education class. I had had a few episodes of high blood pressure, but my doctors felt we were managing it well, and otherwise I felt healthy and ready to deliver my baby. When I went into labor one December night, though, everything seemed to go wrong.
During a long and difficult labor, my daughter’s shoulder got stuck behind my pelvic bone, a medical emergency called “shoulder dystocia.” At the time, I didn’t know that my daughter could die or suffer severe injury while she was trapped. But it was clear that something was very wrong when my room was suddenly filled with more medical staff.
The entire room became very quiet. I closed my eyes and prayed for everything to be ok as my baby fought for her life. After several agonizing moments, I heard my baby’s first cries and wept.
My daughter was delivered, but had what was described to me as a “floppy arm,” which we later learned was a severe brachial plexus birth palsy. She had bruising around her head and one of her eyes opened less than the other. I had a third degree vaginal tear, a broken tailbone, and nerve damage from the way my daughter was delivered. We didn’t know how long-lasting or serious these injuries were, but we went home together and started making phone calls to figure out Eva’s and my follow-up care.
During the next two days, my legs had gotten very swollen, and when I spoke to my doctor then, I was told that “these things are normal.” By day three, I started to feel dizzy and got a bad headache. I went to a local Walgreens and found my blood pressure was high. I called my doctor again, and we were told to go to the emergency room right away. After several tests, we found out that I had a rare and dangerous condition called postpartum pre-eclampsia. I would have to be admitted to the hospital to get treated.
I stayed in the hospital for a few days receiving IV treatment, and went back home exhausted, feeling like I had missed out on caring for my infant daughter in her first few days of life. I was also very worried about both of our health issues. A few days later, my high blood pressure symptoms returned, and my doctor told me to go to the emergency room again. I did and was discharged later that evening with minimal instructions. A few days after that I had another round of symptoms and finally, the doctor I spoke with on the phone said, “You’ll have to keep going back until they give you blood pressure medication.” I felt angry with my body that it couldn’t heal and recover like I thought it should, frustrated that it was so hard to get the healthcare I needed, and scared that something even more serious would happen to me, like a stroke.
When I Realized I Could Help Improve Birth Safety
As I lay on the emergency room bed during that last visit, I started to think about the fact that I was fortunate to be able to leave my home and go to the emergency room. I had insurance that would help me pay for my care, and I had my husband to watch our baby. Some parents do not have the finances or the ability to get to the emergency room in time, and that thought began to really anger me on their behalf.
I spent the rest of my maternity leave in between doctor’s appointments for my daughter and myself. I began mental health therapy to help me cope with my grief and trauma at what I experienced. My newborn daughter started twice weekly occupational and physical therapy to help her heal from her injury.
Eventually, I was able to get connected with other patient families who had been in my shoes on Facebook and in person. I learned through my own experience and in talking to parents that insurance doesn’t always fully cover my or my baby’s birth injuries – and that treatment can be expensive. Also, if you return to work, your employers have a strong role to play in how flexible they can be in allowing you and your child the time off during business hours to get the care you both need.
Although many of us had talked to our healthcare providers and taken birth education classes, none of us knew much, if anything, in advance about the kinds of injuries that can happen to mothers or babies during childbirth. Sadly, many of us also felt that our providers didn’t fully explain the risks to our babies once we were in the delivery room.
How I Started My Advocacy Work
Was there something I could do to help make childbirth more safe in Georgia? I started a lot of Google research and looked up experts online that I emailed asking for time to speak with them.
The more I studied, the more it became clear to me that many of the injuries parents and babies receive during childbirth could be prevented. I found that I had risk factors that made my daughter and I more likely to have the injuries we experienced. I began to wonder how many birth injuries could be avoided if there simply was more education and awareness around these issues.
Healthy Mothers, Healthy Babies Coalition of Georgia was one of the first places I spoke with about these questions, and they have been very engaged and helpful throughout my entire journey.
I also wrote and spoke with my representatives in the Georgia legislature, including Sen. Elena Parent. With her strong support and guidance, I found other state senators and representatives that I reached out to and they took the time to listen to me and other patient families about our concerns and challenges caring for our children. I also connected with providers and other experts at Children’s Healthcare of Atlanta and the Georgia OBGYN Society, who answered my medical and other questions and helped me to develop a plan for how to begin to work on preventing birth injury and improving birth safety in Georgia.
So, it all began with simply asking a lot of questions and mustering up my courage to reach out and talk to people one on one about what I had heard from patient families and my own experience. It also took a lot of personal time, but I found that the more I became involved with my work, the more it helped me to positively channel my anger, fear, and worry about my daughter’s condition and recovery.
What I’m Working on Now
Together with other patient families and state legislators (and even the Governor), we were able to get Georgia to declare the first ever Birth Safety Awareness Day in 2020. We received support from both Republicans and Democrats, from OBGYNs, and pediatricians.
Now, we’re working on a study funded by Children’s Healthcare of Atlanta to identify how many children in my state have brachial plexus birth palsy – the same condition that my daughter has. This study will help us know more about which babies and parents are at risk for this injury in Georgia and what kinds of resources they need to help them on their journey to recovery.
In addition to the study, our goals this year are to improve patient and provider education. December 2020 we will host a provider webinar with HMHBGA on birth injury as a health equity issue. Ultimately, we want to see a state (and nation) where parents and babies can experience a physically, emotionally, and spiritually safe childbirth.
Most of the work I do takes place late at night after Eva goes to bed. On some of my vacation days, I go to the Georgia state capitol and meet with legislators. In early evenings, right after work, I schedule conference calls with partners and supporters to provide updates on my activities. I keep reading and learning as much as I can.
Things to Keep in Mind If You Want to Become a Childbirth Safety Advocate
Here are some tips to keep in mind if you want to support birth safety or become an advocate, yourself.
- Start by looking up groups you can volunteer with to help you understand who is doing what in our state and what opportunities there are to help.
- Don’t be afraid to reach out to a group and just ask how you can get involved in a big or a small way, whatever feels comfortable for you.
- There can be an emotional toll when someone is talking about a trauma that happened to themselves and their baby. It can be helpful to have a mental health professional help to identify the signs of when your volunteer work may be impacting your mental health, and to assist you in identifying some healthy coping mechanisms.
- As you talk with other people about birth safety, keep an open mind and open ears to listen for ideas or challenges that you haven’t considered. This is especially important when supporting communities of color in childbirth safety. Keep working to listen, learn, and support people how they need you to support them.
- Remember small steps can take you on a long and powerful journey. Pace yourself so you can contribute consistently to this issue over time.
If you’d like to become a birth safety advocate, there are many ways you can help. A great place to start would be to volunteer and get in contact with Healthy Mothers Healthy Babies Coalition of Georgia.
Our family continues on its journey to recovery, and our daughter is growing and adapting well to her disability. Ultimately, our birth advocacy work has given us a new way to find healing and hope, even on the hard days.