Birth Defects Insights, a Teratology Society Blog
By Janet Hardy, PhD, MSc, MPH, Teratology Society Member since 2005
This blog also appears on Medium and LinkedIn with additional photographs:
When a brave little girl sits in front of this white woman and reluctantly gives up an important possession….a tiny, dirty wad of tissue used to keep the drainage flowing from her ear onto her threadbare sweater….I am stripped to the core of my humanity and reminded just how profoundly privileged my life is. This woman is me, Janet Hardy, an epidemiologist whose specialties are medication safety in pregnancy, and maternal-child health research and programming in domestic and low resource regions. However, this past summer I stepped out of my research comfort zone. Every time I do this, it changes me.
Let me explain. I’ve worked with communities in Central America, India, and African countries, but over the summer I worked specifically in Philippi Township, Western Cape, South Africa on a project that involved young school-age children. It became known as “the ear project.” I was a member of a team of 26 that flew in from various parts of North America to work with a local team in this large township outside of Cape Town. Philippi is an informal settlement, where homes and businesses are constructed wherever space is available (i.e., metal shacks, attached or in very close proximity). “Informal” implies that the government doesn’t recognize it and, therefore, doesn’t provide basic services such as water/sewer, electricity, and garbage collection. There are over 200,000 people living in Philippi, of which over 90% are black African. Xhosa is the primary language.
We worked with school children in kindergarten through the third grade. Each day, the team traveled to work at a different school. Of note, the project took place in late July – August. This is winter-time in South Africa and so school was in session.
The Ear Project
Globally, acquired hearing loss is underdiagnosed, undertreated, and poorly understood. Ear infections are highly prevalent in South Africa and, in communities such as Philippi, the average child with a chronic ear infection may have an active infection with drainage for three years. Complications from these infections can include destruction of the internal ear structures that are needed for proper hearing. Brain abscesses can be the most deadly type of complication from these infections. Hearing loss, whether congenital or due to infections, can have a major negative impact on a child’s development, education, socialization, self-esteem, and future employment. Among the many daily concerns for families in Philippi, attending to this health problem is generally a low priority. There are approximately 12,000 students, or “learners,” in Philippi schools. The regional budget and small number of audiologists allow for school-based hearing screens of approximately 150 learners per year from the Philippi community in which we worked, largely based on referrals. It’s a woefully inadequate number relative to the magnitude of the problem.
The ear project began a few years ago with a physician colleague working in Durban, South Africa. The portion of the project that I was involved with last summer represented the largest scale-up effort attempted. We were essentially trying various processes to provide an efficient ‘pop-up’ school-based hearing/ear infection screening program. Our project scope included: classroom-based education on ear/hearing health, safety, and infection prevention (“nothing smaller than your elbow goes in your ear, even if you have a tickle”); and, for those children with a parent-signed consent form, we implemented a hearing screening program using new IOS-based technology and/or traditional audiometric technology, with or without an intervention/treatment or referral for more extensive care.
The project represented the collaboration of multiple entities working ahead of time to lay the groundwork as well as the pop-up field team (field team of approximately 40 people). The team collaborators included Amandla Development, Yale University (active faculty and alumni, who were predominantly clinical or allied health professionals), the University of Cape Town, the Red Cross War Memorial Children’s Hospital, the City of Cape Town Health Department, Western Cape Education Department, and the University of KwaZulu-Natal. Basic funding was provided through multiple sources. Additionally, in-kind and volunteer service was provided. As an alum, I provided my time as volunteer service through the Yale Alumni Service Corps.
What We Found
Our team screened over 1,530 children, an accomplishment that we were proud of. Approximately 10% of children screened in our program had pathology. The final analysis is not yet available. However, I worked with a high proportion of little children who failed their hearing tests, many children with burst eardrums and drainage due to infection…and many children with one or more foreign objects that had evidently enjoyed a long residence in their host’s ear. Ten children required immediate surgery. Six children were found to have cholesteatoma, an abnormal growth in the ear. Cholesteatoma may occur as a birth defect, but it more commonly arises following repeated middle ear infections. Untreated, it can result in hearing loss, brain abscess, meningitis, and, rarely, it can be fatal. Published occurrence estimates for cholesteatoma are few although there seems to be some consensus around 1 in 16,000. Suffice it to say, our finding 6 cases in 1,530 screened children was higher than expected and most of our North American team clinicians had never seen a case in their careers to date.
Projects in global low resource regions are the highlight of my year, regardless of whether they are funded projects or volunteer efforts. Why do I do it? Because each time I get involved in such a project, I learn about myself; because I hope that I can make at least one life a little easier; because I learn how to be a better research scientist by understanding how others live and the struggles they face. I am reminded that the education I received was a gift and that it's mine to pass on as best I can.
I would urge scientists in any career stage to periodically step outside of your comfort zone: To get involved with fieldwork in a community that is unlike your own, domestically or globally, and to learn, deeply, what it is like to interact with communities who can benefit the most from your skills. You may surprise yourself at the breadth of skills you’ve acquired during your education and career – they are indeed greater than the specific degree you graduated with and the specialty of your research. You’ll return home and you’ll never look at your data as just numbers and covariates again, and you’ll think about the missing data. Because now, the numbers and covariates have faces and voices and the secrets you learned from these beautiful communities are also carried by those in the USA and elsewhere in the western world. Not only might it make you think more deeply about your research, but about your humanity.
About the Author
Janet Hardy, PhD, MSc, MPH is Assistant Professor of Epidemiology/Biostatistics (affiliate) at U. South Florida Dept. Epidemiology and Managing Principal of ECC Population Health Group which provides expertise-driven research & programmatic consulting to nonprofit, for profit & legal organizations in: 1) maternal-child health in domestic/low-resource settings; and 2) pharmacoepidemiology, women & child health. Dr. Hardy has been a Teratology Society member since 2005 and has served on the Education, Program and Science Committees.
About the Teratology Society
To understand and prevent birth defects and disorders of developmental and reproductive origin, the Teratology Society promotes multi-disciplinary research and exchange of ideas; communicates information to health professionals, decision-makers, and the public; and provides education and training.
Scientists interested in or already involved in research related to topics mentioned in this blog are encouraged to join the Teratology Society and attend the 59th Annual Meeting June 22 – 26, 2019, the premier source for cutting-edge research and authoritative information related to birth defects and developmentally-mediated disorders. Teratology Society members include those specializing in cell and molecular biology, developmental biology and toxicology, reproduction and endocrinology, epidemiology, nutritional biochemistry, and genetics, as well as the clinical disciplines of prenatal medicine, pediatrics, obstetrics, neonatology, medical genetics, and teratogen risk counseling. In addition, the Teratology Society publishes the scientific journal, Birth Defects Research. Learn more at www.Teratology.org. Find the Teratology Society on LinkedIn, Facebook, and Twitter.