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Noteworthy Professional News

Noteworthy Professional News

Khonyongwa-Fernandez, Gigi MSc, ACC; Degl, Jennifer MS; Discenza, Deb MA; Eklund, Wakako DNP, APN, NNP-BC

Editor(s): Eklund, Wakako DNP, NNP-BC, Section Editors; Smith, Heather E. PhD, RN, NNP-BC, CNS, Section Editors

Author Information
doi: 10.1097/ANC.0000000000000928
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Gigi Khonyongwa-Fernandez, MSc, ACC; Jennifer Degl, MS; Deb Discenza, MA; Wakako Eklund, DNP, APN, NNP-BC

As parents of former neonatal intensive care unit (NICU) infants and parent leaders in the neonatal community, racial and health equity is more than just a news item to us. Even before the racial justice upheaval in 2020, NICU parents recognized a need for action on these issues. Parent-led efforts are beginning to make an impact within neonatal care initiatives. Within this section, 3 parents share personal experiences, often raw and painful, to urge the neonatal nursing community to increase actions, whether in research, quality improvement initiatives, or policy, to propel the work forward by enhanced collaboration with mutual trust and understanding.


I was born in Tuskegee, Alabama, 2 years before the infamous syphilis study ended.1,2 The US Department of Public Health and the Centers for Disease Control and Prevention called the affected individuals “test subjects” and viewed them as a group of poor, Black, uneducated sharecroppers. These participants could be easily studied because they did not know the right questions to ask. The Tuskegee study and its impact were real in my life growing up, as we personally knew some of the so-called “test subjects.” We knew them as Mr Pollard, Mr Shaw, and my maternal grandmother's cousin Mr Hawkins, who had families, hopes, and dreams. These individuals and their families and descendants, as well as the trajectory of my entire community, were permanently altered because of the aggression and discriminatory clinical practices committed by reputable and trusted predominantly White institutions. There were many adverse effects of this 6-month turned 40-year study, which continues today. Unfortunately, distrust in any efforts associated with research and clinical trials remains a part of the deeply woven fabric not only in the Tuskegee community but also in entire Black communities nationally and even globally. Strong suspicions or beliefs that researchers use “clinical trials” as a facade for personal/professional gain and to harm the “subjects” are deeply embedded in the minds of many in 2021. Although I left Tuskegee many years ago and have lived, worked in, and traveled across the United States, as well as the globe, currently residing in London, England, the impact of Tuskegee still lingers. The hypotheses of this study assumed a lot. The assumptions benefited and/or justified the conduct of research and not the people who were participants. Similar assumptions were projected onto me as this brown-skinned NICU mother. Despite my professional background in senior healthcare management, and my ability to articulate and advocate for myself, I intuitively felt the urge to fight off these often-silent assumptions throughout my child's NICU stay.

During the almost 6 months-long NICU stay, I vividly remember watching our surviving 24-week twin constantly fight for his life. I was aware that a clinical trial was occurring in our NICU and they were enrolling patients to explore the relationship between formula feeds, cow milk sensitivity, and necrotizing enterocolitis (NEC). The primary investigator (PI) of the study saw and walked past me daily in the NICU. On occasion, she looked me in the eye but never addressed or acknowledged me for 2½ months, until my son developed NEC and underwent surgical procedure for resection and colostomy, thereby becoming a potential candidate for her study. Her nonacknowledgment of me prior to this stood out because the other neonatologists spoke to me frequently.

When the PI finally spoke to me to discuss her study, she was surprised that I was a “professional” who was educated and articulate. The historically common, and often unchallenged, assumption that a Black person is uninformed, uneducated, and unintelligible likely hindered the PI to see who I truly was. The misconceptions of me continued after I said I would “consider” participating in the study. For a few weeks afterward, she made a beeline to me daily upon entering the NICU, looking for my consent. She assumed I had said “yes” and expected a signed consent immediately. This is a common occurrence for Black NICU parents, in that our spoken words are often not heard. An avoidable distrust unfortunately grew in my heart, similar to occurrences likely found in many NICUs globally.

Although an incredibly complex, multilayered, and sensitive issue, racial and health equity is a concept that can be changed but it will take a comprehensive, meaningful, transparent, and non–sugar-coated approach. This multidimensional approach is one that I also embrace as a NICU Parent Leader. No one perspective, person, or organization can solve this issue on its own. We need to realize that addressing the racial inequality in the NICU is not just the issue of the families feeling the inequality but this is everyone's issue as well. A few suggestions to begin this process are as follows:

  1. Be willing to change. Otherwise, why bother?
  2. Implement continuous Unconscious Bias training. This cannot be a tick-box exercise but one that has a real, impactful, and measurable outcome.
  3. Start on an equal and level playing field by recognizing that all entities, the care providers, researchers, and NICU parents are offering expertise.
  4. Be honest, empathetic, inclusive, and transparent. These qualities are self-explanatory, however, a key to show parents unbiased evidence of them being manifested.
  5. Exhibit active, compassionate, and respectful engagement and listening. Listen to hear and not just to respond. A key point to remember is the importance of engaging and building a genuine relationship with parents BEFORE you seek their support for your study, research, or projects.

There are many more recommendations to consider, but these are a few. If focused efforts are made, we can fundamentally change the way the neonatal community engage with underrepresented NICU families, once and for all.


As a woman who grew up with very dark olive-toned skin and stood out in every classroom and every playground, I have incredible respect, empathy, and love for the African American community. As an adult and as a new mother in the NICU with my 30-weeker daughter, Becky, I saw firsthand the White as well as socioeconomic privileges I had in being able to buy my own breast pump and provide my daughter with breast milk expressed in a private office, to craft my own maternity plan and more. My daughter benefited from excellent access to the best doctors. But as I grew as a parent leader in the NICU parents' community, I saw the challenges minority NICU families had, and I was horrified. Year after year, I raised my voice at coalition meetings and conferences both at state and national levels that we White parents did not represent the full NICU population and much work was needed. Speaking up did little because nothing was done other than to acknowledge the problem. Fast Forward to May 2020 and with the horrific murder of George Floyd, I saw a serious shift in how our country responded to systemic racism. I realized that my time should be spent effecting changes in my own community. What started as an informal alliance grew into a full nonprofit organization—the Alliance for Black NICU Families.4 But as a White woman of privilege, I realized the mirroring of unity was so important. I was honored and privileged that Ashley Randolph of GLO Preemies agreed to be my cofounder and our President.4 Little did I know that the formation of the Alliance would also have a far-reaching impact just a few short months into existence when I introduced myself as a co-Parent Leader of the Leadership Team for the International Neonatal Consortium (INC),5 which NANN has been actively engaged since INC's inception. As an organization that seeks to bring together stakeholders toward driving therapy development and needed research in neonates, the team was instantly interested in the Alliance and how INC could do its own part. The October 2020 INC meeting, which drew participants from various global regions, included a robust Racial and Health Equity session with multistakeholder panelists. As of early 2021, INC stakeholders approved and enthusiastically supported a Racial & Healthy Equity in Clinical Trials workgroup to continue the work.


I am a mother of four. My youngest is a micro preemie who was born at 23 weeks gestation in 2012, weighting only 1 pound 4 ounces. We both almost lost our lives. I needed more than 30 units of blood to survive my daughter's delivery due to my advanced case of placenta percreta, and my infant spent 121 days in the NICU. We are both lucky to be alive. My daughter endured more medical interventions than most healthy adults will experience in their lifetimes. She participated in 2 clinical trials that helped her thrive. I consented to these without hesitation because I trusted the medical team. Because of our top-notch medical care, I survived a life-threatening pregnancy and delivery and have since become an advocate for maternal and neonatal healthcare. I serve on the boards of various professional organizations that contribute to the future success of mothers and infants. We experienced exceptional healthcare and were given opportunities to participate in cutting-edge medicine that saved our lives. Unfortunately, not every NICU infant is afforded the same opportunities and not every parent will consent to a clinical trial. Could this be because the approach is tone-deaf to what that family is going through, such as socioeconomic challenges? Is there a lack of trust among different races or backgrounds due to historic or current events? These are the questions that we must ask before we strategize toward racial and health equity for all infants and families. This is why Deb and I are thrilled that the INC has encouraged us to lead the Racial & Healthy Equity in Clinical Trials workgroup. It's time.

While we find it heartening to see all of the efforts in this piece being taken seriously, we are fully aware of the “check box” mentality and how the efforts tend to be minimized, underfunded, and outright ignored all over again. With the spark of a moment, our society, including the neonatal community, has the opportunity to make real, long-term infrastructural changes. We will pass the test, if each of us in every community turns the moment into a lasting movement. Whether it is in research, policy, quality improvement, or education, actions are needed to propel the work further.


1. Brandt AM. Racism and research: the case of the Tuskegee Syphilis Study. Hastings Cent Rep. 1978;8(6):21–29.
2. Tuskegee Study, 1932-1972. Published 2020. Accessed May 8, 2021.
3. Alliance for Black NICU Families. Hope is where the heart is. Published 2020. Accessed May 8, 2021.
    4. GLO Preemies. Accessed June 30, 2021.
    5. International Neonatal Consortium. Accessed May 17, 2020.

    About the Authors

    Gigi Khonyongwa-Fernandez, BSc, MSc, ACC:

    Gigi is a Credentialed Professional Performance Coach and Founder of Families Blossoming, a company she began 10+ years ago, due to her passion for providing transformative services initially to the NICU and special needs communities. Gigi has almost 20 years as an experienced former healthcare professional who has held senior clinical and strategic management roles both in the US and UK. She serves as Vice President of the Board of Directors for the NICU Parent Network (NPN) in the USA and on the Parent Advisory Board of the European Foundation for the Care of Newborn Infants (EFCNI) in Germany. Gigi was recently appointed to the 1st Chair Committee of the Global Alliance for Newborn Care (GLANCE). She resides in London, England.

    Jennifer Degl:

    Jennifer Degl is the founder of Speaking for Moms and Babies, Inc. Her mission is to educate the public on maternal and neonatal health issues. She is the author of three books and has published articles in the Journal of Pediatrics, as well as countless online media outlets. She is a passionate public speaker for maternal and neonatal health care issues, a member of the International Neonatal Consortium, and she also serves on the Board of Directors for NIDCAP Federation International and the NICU Parent Network.

    Deb Discenza:

    Combining fields in technology and publishing, Deb has created PreemieWorld LLC. as the go-to space for education, support and resources for the preemie community including the acclaimed book, The Preemie Parent's Survival Guide to the NICU. Prior to PreemieWorld Deb founded and ran the award-winning Preemie Magazine. Deb provides public service to her community in the form of being a founding member and steering committee member of the National Premature Infant Health Coalition and a founding member and former Leadership team member of the Preemie Parent Alliance (now NICU Parent Network). Most recently she has become a co-Director of the International Neonatal Consortium.

    © 2021 by The National Association of Neonatal Nurses.