I vividly recall the goosebumps on my arm and the call to action I felt inside as the words “It’s not okay” repeated over the speakers. When I paused to look around the conference hall, I could see that the important messages delivered by our Keynote Speaker, Dr. Terri Major Kincade (Dr. Terri), were landing hard and deeply for many. In my day-to-day life I am not often exposed to the realities of deep rooted racial disparities. My awareness often ends at the level of knowing there is a problem but not truly knowing why, how or what can be done about it.
Racial disparity is prevalent in every aspect of society but especially in the area of perinatal care, maternal morbidity, and mortality. In this interview we get a glimpse into what has inspired Dr.Terri’s career as Attending Neonatologist, CEO, Dr. Terri MD. Dr. Terri shares what she has witnessed with the families in her care and begins to outline the repetitive disparities in African American perinatal loss support.
Please tell us a little about yourself? I’m originally from Baton Rouge, Louisiana and was inspired to go into Neonatology by my sister who was a 1lb baby born in 1968. I was the 1st college graduate in my immediate family and the first medical doctor. I’ve called Texas home for the past 24 years. I’ve been married almost 25 years and have two children ages 18 and 21. I met my hubby at a Carl's Jr hamburger restaurant in the mall during my 2nd year of medical school. I was sitting in a booth crying and homesick in Los Angeles, California…so far away from home and he walked up to me and asked me if I was okay. The rest is history. I love caring for babies and families and absolutely believe that I am doing what God put me on Earth to do.
What are the first things that come to mind when you put a smile on your face? My children and my family, sending a sick baby home, watching my favorite movie or listening to my favorite song.
What inspired you to pursue your medical career in helping sick children and their families? My premature sister, I was fascinated that she could fit in the palm of my hand. I decided in elementary school that I wanted to be the kind of doctor that took care of the kinds of babies that could fit in the palm of your hand. Later during my pediatric training, I often found myself taking care of families whose babies would not survive. I found a special connection with those families and a gift in being able to provide hope and light at a time that seems hopeless and full of despair. It’s such a gift to care for families who have experienced loss…they are the strongest people I know.
What have been some of the common themes you have witnessed in families dealing with perinatal loss? A desire for the gift of time, a desire for dignity in being able to honor their children… to choose how they want to say good-bye, a desire to participate in decision-making…to make informed choices at critical points before, during and after. I have seen frustration with the follow-up process, answers to the why questions, and with the negativity from the medical team or care providers questioning their desire to try different therapies.
I had the opportunity to listen and learn from your keynote presentation at the 2018 PLIDA* conference. The title was Accepted, Anticipated and Negated: The Paradox of Repetitive Perinatal Loss in the African American Community: A Health Disparities Perspective. Can you share a little summary of the meaning and your thoughts behind the title? The legacy of African Americans in the U.S. is one of loss that stems from 339 years of slavery. Although slavery ended 165 years ago, legalized segregation only ended 65 years ago. The long standing impact of this aspect of American History continues to be embedded in all aspects of US American History and contributes to ongoing disparities in health, education, and economics that are challenging to overcome as this is not just a difference in equality it’s a difference in equity. In my talk, I wanted to point out that much of what African Americans in the U.S. continue to endure is a travesty in life… but this continues even in death. Persons of color are less likely to use hospice, less likely to participate in end of life discussions and more likely to experience early death and adverse outcomes from all causes. I named the talk Accepted , Anticipated, Negated because these statistics are known, these statistics are accepted and often these statistics are negated and replaced by victim blaming.
In your presentation you shared many concerning statistics around the rise in preterm birth rates and the incredible disparity in infant and maternal death for women of colour. What were some of the most shocking statistics and how have they shaped your practice and research? For me one of the most shocking statistics is that around Socioeconomic status (SES) and poor birth outcomes. For most poor health outcomes, an increase in SES status would improve outcomes. This is not true for adverse maternal outcomes. Today in 2019 an African American woman with a college degree is 2 times more likely than a Caucasian woman with a H.S. Diploma to experience an adverse birth outcome. This to me is mind-boggling. Additionally, the CDC released a comprehensive report underscoring the implicit bias inherent in our medical systems and the likelihood that racism is an ongoing contributor to poor birth outcomes. Today in 2019 preterm birth rates are double for women of color even when the mother has access to health care/insurance, even when the mother has a college degree, even when the mother has prenatal care. In my work with the March of Dimes my primary area of outreach is increasing awareness around this disparity and facilitating conversations to ensure that every patient has equal opportunity for a good outcome.
What are some of the common myths or misperceptions about these disparities, either conscious or subconscious, that are adding to the problem? One of the primary myths that leads to subconscious bias is that this disparity in outcomes is due solely to poor choices by women of color, that women of color just don’t take care of themselves…they don’t eat well, they have hypertension, they have diabetes, they don’t get prenatal care which leads to victim blaming. The research shows these misperceptions are not the reality. In many cases, women are a product of the system that they receive care. We are all products of the places we live, work and play in. For African American women we know that chronic stress, often due to the perception of racism, plays a huge role.
In your experience and research can you highlight some of the leading factors contributing to these disparities in support and healthy outcomes? Health Disparities enter systems for three reasons: 1. Differences in opportunities and exposures, 2. Differences in Quality of Care and 3. Differences in Access to Care. Many of these differences do follow along the lines of SES . Some communities have more robust opportunities and exposures, better quality of care and better access. Today in the U.S. we can predict outcomes by zip code….these are differences that should not be.
What are a few practical ways parents within the community and health care professionals can work towards changing these disparities? The new model for addressing Health Disparities includes a broader lens. Out of the hospital and into communities. The Social Determinants of Health asks us to examine where people live, work and play. Healthy Babies start with Healthy Moms in Healthy Families. Where do they live, is there a place to go outside and play? Is there a place to buy fresh fruits and vegetables? Is there adequate and safe public transportation?… all of these things are correlated with better outcomes. So one practical aspect is to work with community partners to improve health outcomes… this may include churches, farmers markets, housing and transportation entities. Additionally using community mentors to foster trust in a population that no longer trusts the system can be very effective i.e foster grandmothers, foster aunts as mentors for lifestyle choices and parenting choices.
What are two positive changes you have witnessed in the past six months that give you hope for the future? We’ve seen positive results using churches, which are trusted pillars in the African American community, for prenatal education and mentoring and have been able to document a knowledge increase. We would like to explore how churches can help to improve the effects of mental health…a safe space to discuss true mental health issues which can be taboo in the African American community. We’ve also seen a positive impact in our pre-conception outreach program with college students with respect to the Social Determinants of Health and their impact on the Life Course.
When can we hope to see this and more of your great work in a Ted Talk ? I hope one day soon! It’s one of my life long goals. This is such an important topic and every person deserves an equal opportunity to good health. We have to think bigger than hospitals and access to care… access to care doesn’t matter if the access is tainted by inequity.
I remember calling home from the PLIDA conference and it seemed like every call had me restating messages from Dr. Terri’s presentation. I couldn’t get it out of my head. I wanted to understand more about what was happening in the USA but also learn about what was going on in my own country, province and city. Is this a global issue? What kind of racial disparities in perinatal loss support were going on right in my own backyard? The next day I found Dr. Terri sitting at the back of the conference hall and I chose to introduce myself, the Carry You With Me Community and start the conversation on the impact of her presentation. She was humble, friendly and so receptive to working together to help spread her powerful messages. This article only touches on some of the research and major themes of her presentation and advocacy.
I am grateful to Dr. Terri for opening my eyes to this and sharing her time and thoughts with our community. I have only begun to scratch the surface of learning in this area but I am curious to know more and I am passionate about bringing awareness where I can. Change is possible. Mamas and babies of every race, gender, religion, etc. need to have quality perinatal support in health care and in our communities.
I hope that you will find something in this interview that has you reflect on the disparities you have experienced or witnessed in your life. Perhaps even explore for a moment your own conscious or subconscious biases (there are lots of assessments and research online, google it ;). Continue to ask questions, share with others what you learn and take steps in directions you are called to whether they be tip toes or giant leaps.
XO ~ Alanna
*PLIDA - Pregnancy Loss and Infant Death Alliance - 2018 St. Louis Conference