By Emily Mendosa
Fetal Alcohol Spectrum Disorder (FASD) refers to the range of diagnosable medical conditions that can occur in people who were exposed to alcohol before birth, including physical, mental, behavioral, and learning disabilities. It is incredibly common; in fact, 1 in 20 kids in the USA are estimated to have FASD!1 This often overlooked condition can have lifelong effects and is associated with many adverse outcomes, including higher rates of school suspension and expulsion, incarceration, and mental illness – in fact, 90% of adults with FASD have a comorbid psychiatric condition and 25% attempt suicide.2,3,4
It was through a summer internship during medical school at the Violence Intervention Program, an organization that provides healthcare to kids in the Los Angeles foster care system, that I learned about FASD for the first time. Frankly, after hearing how common it is, I was surprised that I’d never heard about it before.
My life has revolved around children since I was in middle school, when my family left our home in Dallas, Texas to move to rural southwestern Kenya, where my parents founded a children’s home for 100 orphans. I grew up alongside those kids, and as an adult, I’ve spent countless school breaks volunteering there. In college, I studied Human Biology with a concentration in Child Development. After graduation, I was a preschool teacher for 2 years in California, and left my teaching position to attend medical school with my heart set on becoming a pediatrician. In all of those years, FASD was never mentioned – not once.
Driven by the shock of realizing I had never even heard of a condition that likely affected at least one of my students each year, I tried to learn all that I could about FASD during my summer at the Violence Intervention Program. I spent hours reading journal articles and learning how to screen patients for FASD in clinic based on characteristic facial features and other elements of the child’s history. Near the end of the summer, I got a message from my parents in Kenya with a photo of an infant that stopped me in my tracks.
“Today, the children’s home welcomed a new baby girl named Lucy,” the message read. I smiled as I scrolled through photos of her, cradled by joyous children’s home staff at her welcome home party. Strangely, I felt as though I recognized her… and that’s when it hit me. Her beautiful, tiny face, with its smooth philtrum, thin upper lip, and small eyes had all of the characteristic features of FASD.
In the months that followed, despite receiving attentive, loving care, Lucy struggled to take her bottle, fell off of her growth chart, and missed nearly all of her developmental milestones. We grew more suspicious of FASD, and that’s when I started to wonder about FASD in Kenya. Is it common? Who’s doing work on FASD in Kenya? And, what resources exist for Lucy and other kids like her?
I turned to Google, but after hours of searching, all I could find was a Facebook post about FASD from a Nairobi-based organization called Action for Children with Disabilities (ACD). The next time I was in Kenya, I met ACD’s director, Dennis Moogi, for coffee. Like me, Dennis had recently learned about FASD and was shocked that it was not being talked about more. He suspected that FASD could be common in Kenya, but with no published research on its prevalence, could not say for sure.
Since then, Dennis and I stayed in touch, writing a literature review on FASD in Kenya and developing ideas for potential future efforts. When the Breman Global Health Immersion Fellowship announced its call for proposals, we decided to put together a project aimed at raising awareness about FASD in Kenya, and were grateful to receive generous support to fund this work.
This summer, we designed and piloted a 3-hour educational curriculum on FASD with participants totaling 100 healthcare, education, and social services professionals in Nairobi, Kenya’s capital city, and Maai Mahiu, a rural town near where I grew up. Our 4 pilot sessions quickly turned into lively forums, with participants eager to contribute to the discussion with interesting insights and questions. We learned so much from this that we are looking forward to incorporating into future iterations of our curriculum, and participants from our sessions have already been working on a couple of other exciting projects.
Those successes are exciting, but what touches my heart the most has to do with Lucy. Now two and a half years old, she is still very developmentally delayed – not walking, not talking. She is also cherished deeply. I spent an evening with her as she bounced happily in her swing, and she was constantly being visited by other kids and staff members who wanted to cuddle her and try to make her laugh. Over the years, her caregivers have worried about her development, at times even asking the children’s home nurse to take her to the hospital for medicine to make her “normal.” After attending our training sessions, these same caregivers told the nurse that they understood Lucy better and felt empowered to care for her unique needs.
That, for me, is the true aim of pediatrics: not only to care for kids, but to build a world that can care for them, too.
As we look towards the future, Dennis and I hope to draw on connections made this summer to develop a referral network for Lucy and children like her, ultimately decreasing barriers to diagnosis and needed therapies. We also hope to better understand the impact of FASD in Kenya; in fact, a research team led by an attendee from one of our sessions is designing a study to investigate the prevalence of FASD in Kenyan primary schools. Finally, we are actively working on improving our curriculum so that we can use it in the future to keep spreading the word about this preventable condition. I am incredibly grateful to the Breman family and the USC Institute for Inequalities in Global Health for providing the generous funding for our summer project, and look forward to building on this work in the future.