What is the ROBIN Project?
ROBIN stands for "Reducing OBstetric INjury." The ROBIN Project was started in 2015 by Paige Rohe, MPH, to promote childbirth safety in Georgia and to support patient families impacted by childbirth injury.
Our research and outreach has found that there is no public office or department at the state or federal level currently reviewing birth injury prevention, and no one studying it within academia in Georgia. Worsening maternal health outcomes in Georgia have led us to believe that more information is needed to understand the whole picture of childbirth safety in Georgia and to support patient families who have experienced childbirth injury.
The ROBIN Project has two primary goals:
- Facilitate informed, transformative change in Georgia to promote childbirth safety and to reduce childbirth injury by collaborating with medical providers, patient families, public officials, and the maternal and child health community.
- Strengthen or create support for patient families in Georgia who have experienced childbirth injuries (with a focus on brachial plexus birth palsy) by helping impacted families to connect with each other, to broadly share their voices and experiences, and to identify and respond to unmet medical, emotional, and/or social needs. Are you personally impacted by a childbirth injury? We don't have a lot of patient family resources on our site yet, as we are focused first on policy change and research. But, you can expect more educational resources and opportunities to support your needs coming in 2021.
DISCLAIMER: This is a public policy and patient advocacy website. The ROBIN Project and its website does not provide medical or legal advice, and should not be relied upon for those purposes. The intent of this website is to provide public health resources to help healthcare stakeholders improve overall childbirth safety within Georgia and its healthcare systems.- Facilitate informed, transformative change in Georgia to promote childbirth safety and to reduce childbirth injury by collaborating with medical providers, patient families, public officials, and the maternal and child health community.
About Childbirth Safety
To help create transformative, positive change in childbirth safety in Georgia, we have to define what kinds of challenges exist and what opportunities can be leveraged to promote maternal and child health. This starts with having consistent definitions of our terms, based on research and patient family input. Are you a patient, provider, or member of the maternal and child health community? Feel free to reach out to us with your thoughts on these definitions and how we can ensure accuracy and inclusiveness in these terms.
Key Terms
Here are the definitions of the terms we use in our work.
- Childbirth injury: This is a term we are using to describe injuries to the birthing parent or infant during delivery, and can also include emotional injury (such as psychological trauma or depression due to the lived experience of delivery or the injury that has occurred).
- Childbirth safety: The state of a birthing parent and baby experiencing childbirth in an environment where they can safely deliver and recover from childbirth with minimal risk for injury or postpartum complications as possible. Childbirth safety requires close collaboration between the patients' loved ones and medical providers as well as the support of healthcare delivery systems and policies that enable broader access to quality, affordable, and physically proximate prenatal and post-natal care for birthing parents and babies.
- Brachial plexus birth palsy: According to the Nemours Foundation, brachial plexus birth injuries are very common (2 or 3 out of every 1,000 live births) and are injuries that occur during childbirth to the group of nerves, the brachial plexus, that "provides feeling and muscle control in the shoulder, arm, forearm, hand, and fingers." The Nemours Foundation says these injuries can happen if: "the birth is complicated by a breech (bottom-first) delivery, the mother has a very long labor, [or] the baby's shoulders are too wide to fit through the birth canal." Research has shown that in some cases, brachial plexus birth palsies could be prevented through increased training of providers.
- Birth injury in birthing parents: There are many short and long-term physical injuries that birthing parents can experience during delivery, including vaginal tearing. Sometimes these injuries are not always considered gynecological injuries, such as bladder damage, nerve injury, or damage to the heart.
- Birth injury in newborns: According to the Merck Manual's Consumer Version, birth injury is "damage that occurs as a result of physical pressure during the birthing process, usually during transit through the birth canal."
- According to the Merck Manual, infant birth injuries can be minor to severe, most of which resolve without treatment.
- Types of injuries can include: head molding, bruising or scraping, arm or clavical fractures, nerve injuries, skull fractures, bleeding outside the skull or within the brain, and sometimes cerebral palsy.
DISCLAIMER: This is a public policy and patient advocacy website. The ROBIN Project and its website does not provide medical or legal advice, and should not be relied upon for those purposes. The intent of this website is to provide public health resources to help improve overall childbirth safety within Georgia and its healthcare systems.Resources
Review other resources about childbirth safety in Georgia that can help inform policy about childbirth safety in Georgia. We will be adding to this section as we build out this website, and especially will be creating a library of patient-focused resources.
- Watch the provider and advocate webinar, Childbirth Safety: Birthing Injuries, Health Equity, & Birthing Justice
- Georgia Department of Public Health 2017 preliminary study on birth injury in Georgia as part of Title V Maternal and Child Block Grant Application
- Children's Healthcare of Atlanta patient information on brachial plexus birth palsies
- Georgia Department of Public Health's most recent Maternal Mortality Case Review (published in 2019, using 2014 data)
- Mother Jones article on 2017 maternal injury "The Scary Truth About Childbirth"
- Atlanta Journal-Constitution 2018 article on maternal mortality rate worsening, "Georgia's maternal death rate once ranked worst in U.S., worse now"
- The Atlantic 2015 article, "The Mothers Who Can't Escape the Trauma of Childbirth"
- Childbirth injury: This is a term we are using to describe injuries to the birthing parent or infant during delivery, and can also include emotional injury (such as psychological trauma or depression due to the lived experience of delivery or the injury that has occurred).
About Us
Paige L. Rohe, MPH - ROBIN Project Founder
Rohe founded The ROBIN Project in 2015 as a patient advocacy initiative in Georgia.
Rohe and her young daughter, Eva (4) experienced multiple, serious complications during and following childbirth, the most serious and long-lasting of which has been Eva's severe brachial plexus birth palsy. She has since devoted her volunteer time to supporting childbirth safety awareness and supporting patient families who have experienced childbirth injury.
Rohe has more than 15 years of experience in healthcare communications for large corporations, global and national nonprofits, academic institutions, and healthcare delivery systems.She has traveled to as far-flung places as South Sudan, Liberia, Ethiopia, the Dominican Republic, and Haiti in her work in global health communications as well as traveled extensively in the United States.
She began her career in Washington, D.C., working for a prominent a public affairs consultancy on mental health advocacy, and went on to work for a global health organization specializing in disease eradication and elimination and reducing stigma against mental illnesses. Rohe credits her experiences in DC, global health, and as a physician communications specialist within a large pediatric healthcare system as helping to inform her work with The ROBIN Project.
Rohe holds a Master of Public Health in Health Policy and Management and a Bachelor of Arts in International Studies from Emory University.Rohe and her husband Larry, her college sweetheart, enjoy traveling with their only daughter, Eva, watching professional wrestling and Star Trek, and are big fans of Batman: The Animated Series.
Read Paige's Articles on Living with a Childbirth Injury
Paige is a contributor for The Mighty, a prominent disability community blog, where she shares her and her family's experiences dealing with her daughter's birth injury.
View Paige's Resources on Childbirth Safety
Paige is a subject matter expert for Pickles & Ice Cream, a patient education website for Healthy Mothers Healthy Babies Coalition of Georgia.
- Watch the provider and advocate webinar: Childbirth Safety: Birthing Injuries, Health Equity, & Birthing Justice (Dec. 9, 2020)
- Why I Became a Birth Safety Advocate (Oct. 22, 2020)
- Do No Harm: Birth Safety (Sept. 17, 2020)
What We Believe
The ROBIN Project believes...
We have a few core values that are important to us as we further our work in childbirth safety.- Everyone in Georgia benefits when we make childbirth and the first year after postpartum as safe as possible for birthing parents and their babies.
- There are many reasons why birthing parents and their babies experience physical and/or emotional injury during delivery - and it will take input from the patient families, healthcare providers, and the broader maternal and child health community to enhance childbirth safety.
- Our work must be informed by data and evidence-based research to make a meaningful difference.
- Our work is nonpartisan. We will collaborate and partner with all those who seek to research and understand childbirth injury so that we can promote birth safety and create a Georgia that prioritizes maternal and child health.
- Everyone in Georgia benefits when we make childbirth and the first year after postpartum as safe as possible for birthing parents and their babies.
What We Do
The ROBIN Project seeks to improve childbirth safety in Georgia and support paltient families impacted by childbirth injury. We do this through patient advocacy, patient and provider education, and facilitating research into understanding
Current major projects include:
- Serving as a subject matter expert to Healthy Mothers Healthy Babies Coalition of Georgia on childbirth injury and patient and provider education.
- Creating patient family information on birth safety and birth trauma.
- Serving as a pro-bono consultant and project co-lead for Children's Healthcare of Atlanta's 1998 Society Grant to study brachial plexus birth palsy prevalence in Georgia
Previous accomplishments include:- Along with the Georgia OBGYN Society, co-sponsored the development of a public service announcement and fact sheet on birth trauma for the Georgia Chapter of Post Partum Support International. The PSA and fact sheet were launched during the February 2021 Black Maternal Mental Health Summit and the material has a special emphasis on Black parents in Georgia, who are at greatest risk for birth trauma. The PSA is airing through Spring 2021 on the Georgia News Network, reaching 140 stations state-wide and is narrated by award-winning journalist, Brenda Wood.
- Birth Safety Awareness Day at the Georgia Capitol on March 16, 2020 (read the Georgia Senate Proclamation or the Georgia House proclamation)
- Successful request to Georgia Department of Public Health to conduct preliminary study on birth injury in Georgia (read the 2017 report)
- Development of informal brachial plexus stakeholder group to inform work, including patient families, patient advocacy organizations, medical professional associations, Georgia legislators, healthcare providers, public health researchers, and state government agencies.
Upcoming projects include:- Building out patient education resources for this website and for healthcare providers based on patient family feedback
- Increasing general public knowledge of childbirth safety
- Developing policy goals based on findings of brachial plexus birth palsy epidemiological study (study is currently ongoing).
To accomplish our goals, we work with a diverse group of patient families, healthcare providers, community advocates, policymakers, and public officials. Some of the members of our stakeholder group include:- Dabney Evans, PhD, MPH, Associate Professor & Director of Graduate Studies, Hubert Department of Global Health, Rollins School of Public Health – Emory University
- Sen. Sally Harrell, MSW (GA-40), and former Executive Director of the Healthy Mothers, Healthy Babies Coalition
- The Healthy Mothers, Healthy Babies Coalition
- Sen. Kay Kirkpatrick, MD (GA-32), and orthopedic surgeon
- Allan Peljovich, MD, MPH, Medical Director, Hand and Upper Extremity Program, Children's Healthcare of Atlanta
- Yasmin Tyler-Hill, MD, FAAP, Chief, Pediatrics, Morehouse School of Medicine and Medical Director, Hughes Spalding Hospital
- Kimberly Walker, Board of Directors, United Brachial Plexus Network
- Kaprice Welsh, CNM, MSN, MPH, Clinical Liaison, Georgia OBGYN Society
- Serving as a subject matter expert to Healthy Mothers Healthy Babies Coalition of Georgia on childbirth injury and patient and provider education.
FAQ
Here are some answers to frequently asked questions about The ROBIN Project.
- Why did you start The ROBIN Project?
Paige Rohe started the ROBIN Project in 2015 after she and her daughter experienced severe and lasting complications during and after childbirth. A public health professional and communicator, Rohe was concerned to find that there was very little current information or understanding of the prevalence of birth injuries in Georgia. For example, our research and outreach has found that there is no public office or department at the state or federal level currently reviewing birth injury prevention, and no one studying it within academia in Georgia.
Worsening maternal health outcomes in Georgia have led Rohe to believe that more information is needed to understand the whole picture of childbirth safety in Georgia and to support patient families who have experienced childbirth injury.
- I'm personally impacted by a childbirth injury; where can I go to get more information?
This website does not have medical information, but we are building out our patienresources later in 2020. Please join our mailing list to be notified when the resource hub is live.
In the meantime, we recommend you visit the Healthy Mothers Healthy Babies Coalition, United Brachial Plexus Network, or the Birth Trauma Association (UK) to review their resources and services.
- Could you define the terms "childbirth injury," "childbirth safety," and "brachial plexus birth palsy"?
Sure. Check out our "Childbirth Safety" section for key term definitions and a list of resources for further reading.
- Why is this project only in Georgia?
Georgia is where Rohe and her family live. While there is the potential to partner with groups outside the state, the first priority for The ROBIN Project is to focus on our community's needs.
We do value interacting with and learning from the experience of other states. Please contact us if you have information or experience that you'd like to share.
- Are you a registered nonprofit and can you receive donations?
We are not yet registered as a nonprofit, but will be doing so later in 2021. Until then, we are unable to accept donations, but love to receive volunteer help!
(Sign up for our mailing list to be notified of volunteer opportunities or email The ROBIN Project to inquire how you can help).
- How is childbirth safety related to maternal mortality?
The ROBIN Project believes that the some of the same factors that contribute to the high number of mothers dying from preventable causes during childbirth in Georgia also may contribute to preventable childbirth injury. These contributing issues could be: a lack of patient education on risk factors for pregnancy or childbirth, a lack of providers in some communities, distance to access a birthing hospital, social determinants of health (like racism), and lack of patient access or insurance for pre-pregnancy and post-natal care. We say "could" because we don't yet know for sure.
Childbirth injury is not monitored or evaluated as part of monitoring maternal and child outcomes in Georgia. You can read Georgia's 2019 Maternal Mortality Case Study Review to learn more about what we do and do not know about childbirth safety in Georgia.
- Isn't birth injury rare? Why is this important compared to maternal mortality?
We do believe that permanent and severe birth injury is rare, but we have no way of knowing for sure, since no state or federal body currently monitors its prevalence, nor is this area commonly explored among academia. Maternal mortality is a tragic and horrific indicator of a failing healthcare system in our state, and measuring and understanding other aspects of childbirth safety, such as preventable birth injury, can help us prevent further death and disability.
- Why is childbirth safety a matter of social justice?
Many patient families we have spoken with feel that a climate of silence and stigma exists around the fact that their children or birthing parents were injured during the delivery process - even if such injuries could not have been predicted or prevented. And once an injury occurs, access to medical and psychological care to help with healing can be expensive and difficult to find.
We also are concerned that some patient families may be more likely to experience childbirth injury because of larger institutional biases around race or because of limitations in accessing care due to socioeconomic or insurance status - but we do not yet have the data to support this hypothesis. We want to create a culture of safety for patient families and providers so that we can together improve outcomes for patient families.
- Why is it hard to improve childbirth safety?
There are many reasons - in Georgia, the birthing parent's and the baby's medical records are severed at birth, creating limitations for pediatricians and OBGYNs to work together to understand the full picture of performance on childbirth safety.
Additionally, some childbirth injuries (such as brachial plexus birth palsies or a mother's pelvic floor dysfunction) are not diagnosed in the birthing parent nor in the baby until weeks or months after birth - and those outcomes may not be transmitted back to the delivering provider for analysis and performance evaluation.
- Should mothers be scared of giving birth in Georgia?
The short answer is no. Georgia is still a safer place to deliver than many places around the world, and the vast majority of birthing parents safely deliver healthy babies in our state every day.
However, we do have much work to do to provide the safe delivery that birthing parents and their babies in other states in the U.S. and the rest of the developed world experience. Our work with The ROBIN Project is to help identify ways to make things even safer for Georgia's mother and babies.
If you currently are pregnant and have concerns about your delivery, be sure talk to your medical provider about them.
DISCLAIMER: This is a public policy and patient advocacy website. The ROBIN Project and its website does not provide medical or legal advice, and should not be relied upon for those purposes. The intent of this website is to provide public health resources to help improve overall childbirth safety within Georgia and its healthcare systems.- Why did you start The ROBIN Project?