Racial and Health Equity: Key Pieces to the NICU Puzzle and Long Term Outcomes

Deb Discenza, PreemieWorld

As an advocate in the preemie community I have supported families across the world on every continent. The ones at highest risk?  African Americans.  The biggest obstacles to getting equal treatment, equal help?  African Americans.  Equality in the United States has a long way to go and with the African American community at highest risk for premature birth, we have to realize that racism is baked into every system in our country.  Police Brutality, yes.  House, yes.  Education, yes.  Jobs, yes.  Income, yes.  Healthcare, yes.  

Enter a phenomenal colleague of mine who I believe can make a major difference with African American families in the NICU.  With her Once Upon a Preemie Academy launching soon, I can already see how Jenné Johns will “wake up” the NICU medical professionals already “sensitivity training” depleted because of dry and boring material that doesn’t relate to their workplace.  So I was super excited to carve out some precious time with Jenné to get a sense of what this new program is all about.  


Deb Discenza (DD):  Thank you so much for taking time out of your seriously busy schedule to talk with me.  With racial tension and protest across the globe, you are launching the Once Upon a Preemie Academy to positively impact the lives of Black NICU families.  Tell me about that and how you got to this point.  

Jenné Johns, OUAP

Jenné Johns (JJ):  My passion and interest to launch the Once Upon A Preemie Academy started well before the racial tension and recent civil unrest across the globe this year. Professionally, I’ve spent my entire career dedicated to improving health outcomes for low income communities across the US by addressing and reducing racial disparities.

After giving birth to my Micropreemie son our family had a long and turbulent journey through the NICU. I returned back to work as director of health disparities for one of the nation’s largest Medicaid Managed Care Organizations with laser focus on addressing disparities among African American pregnant women and NICU families through education and training. In addition, after publishing my book, Once Upon A Preemie, I started speaking about my Preemie Mom and NICU experiences at industry conferences. In speaking about our families NICU journey, I did not shy away from sharing our experiences with racism and discrimination, and ways the NICU could implement solutions to address this. 

So the Once Upon A Preemie Academy is an evolution of my personal and professional experiences perfectly timed to launch at a moment in history where the culture of change and respect for African American families is paramount. The Once Upon A Preemie Academy is a virtual training program to educate the perinatal and Neonatal community on delivering better and unbiased care to all NICU families, with a specific focus on the needs of African American families. 

DD:  The training you are launching is truly unique especially as it is focused on the NICU/preemie professionals and how this is presented.  What do medical directors and administrators need to know about your program. 

JJ:  The health and healthcare clinical community of professionals need to know that the Once Upon A Preemie Academy is a first if it’s kind training program designed to meet their annual and required cultural competency and implicit bias training. This training is uniquely designed with the Neonatal community at the center. The training program is rooted and grounded in the real patient stories and experiences with solutions to overcome these challenges with actionable tools. In addition there’s something for everyone to learn at this training table- medical directors, nurses, case managers, enrollment clerks, social workers and all the specialists surrounding NICU families during their hospital stay and beyond. 

DD:  Not doing something is costly.  Talk to me abut the costs of systemic racism to parents and children in the NICU and in the pediatric world.  

JJ: The cost of systematic racism for African American NICU families parents is loss of life, loss of health, loss of fully participating in the most fragile period in one’s life as a parent. African American women and babies are dying at alarming and unprecedented rates in the United States due to factors that are 100% preventable, avoidable, and at this point with all of the medical, clinical, and scientific advances, these deaths and disparities are unexplainable. No longer can we indicate race as the cause of these morbidity and mortality rates. Racism is now a recognized public health crisis in this country that costs African American families way too much. This has to end.

DD:  1,000,000% agreed!  How do you see your training providing a lasting, positive impact on professionals, on families and on long term outcomes?

JJ:  The Once Upon A Preemie Academy will positively impact professionals and families by equipping both with the skills, tools, and resources to deliver more equitable care and to require equitable care. In the long run I know that with increased knowledge; attitudes, beliefs, and behaviors will shift. In addition, we will be able to hold one another accountable as a healthcare community to do better because our African American families deserve better, 

Ultimately, I believe the Academy is one solution to the NICU puzzle that will reduce and one day eliminate racial and ethnic disparities.

DD:  What else do you want us to know about the academy, launching, etc.?  Where and when should people be looking for information.  

JJ: We are excited to announce the launch of the Once Upon A Preemie Academy this November in recognition of National Prematurity Awareness Month. We are working with organizations to sponsor the Academy so that it is free of charge for all who want to attend. We are also working to secure continuing education units for a variety of professions.

Please visit the Once Upon A Preemie Academy website at: www.onceuponapreemieacademy.com for more information and to register.


DD:  Thank you, Jenné.

Imagine a NICU that realizes that racism affects a patient from the beginning.  An African American baby in the NICU will have a high likelihood of being on the receiving end of a form of racism prior to discharge either by actions toward the baby, toward the family and more.  Not seeing?  Take the course.  Your eyes will bug out at how racism is in every corner of every unit.  It is not as overt as one would expect.  It can be silent.  It can be behind a closed door.  It can be at bedside without realizing it is racism.  If we can change attitudes and behaviors early on in a baby’s life, that spells hope for that child going forward and for the future of humanity itself.  Every piece of the NICU puzzle falls into place when we start with a place of caring, respect and love for these very fragile babies and incorporate a new baked-in attitude of equality across everything.  With that, everyone wins.  Especially that African American NICU baby.  Because he is the beginning to a better future for all.