A couple of months ago I embarked on a journey to Managua, Nicaragua with a team from Cincinnati Children's Hospital Medical Center (CCHMC) to help provide different types of services, education, and support for children with disabilities and their families. You might ask how I got here…so let me back up.
As a second year genetic counseling student, I am a trainee in the LEND Program. LEND stands for Leadership Education in Neurodevelopmental and related Disabilities. This program is designed to train culturally competent, family-centered interdisciplinary leaders who will strive to improve the health of infants, children, and adolescents with or at risk for developmental disabilities. Trainees are afforded many opportunities through LEND during the year and traveling to Nicaragua was one opportunity that sparked my interest. I decided to apply, which consisted of an essay submission, and was offered a spot on the team. Ecstatic and terrified all at the same time, I committed and began planning.
February arrived sooner than I had anticipated. Before I knew it, I was sitting on the plane from Houston to Nicaragua with different thoughts flooding my mind. What should I expect upon arrival? Would I be accepted by the people of Nicaragua? How will the language barrier impact our team’s goals? And most importantly, would I be able to help? Although CCHMC has a longstanding relationship with Tesoros de Dios (http://www.tesorosdedios.org), the organization we worked with, a genetic counseling trainee had never gone on this trip before.
After a long Saturday of traveling, we arrived in Mangua and settled into the guest house. Sunday was well spent exploring Granada, gathering souveniers, and eating a lot of plantains. I remember looking out at the lake and thinking to myself, “This is where I’m supposed to be.”
The next five days were a whirlwind. I was paired with Dr. Susan Wiley, co-director of the Division of Developmental and Behavioral Pediatrics at CCHMC and developmental and behavioral pediatrician. We saw new visits and follow-ups and I even counseled parents of patients while their child was receiving physical or speech therapy. I saw a variety of patients with different genetic conditions, including Rett syndrome, Rubinstein-Taybi syndrome, Trisomy 21, Joubert syndrome, and others. I assessed parents’ perception of disability and offered psychosocial support to patients and families as needed. Due to cultural and social misconceptions about disability, there were often tears when I provided recurrence risk or limited liability.
In addition to the clinical focus, I contributed to a Developmental Disabilities Seminar with Dr. Wiley at University of Nicaragua-Managua. We spoke with professors, healthcare providers, and others in attendance about the field of developmental disabilities and sharing unexpected news with parents. Everyone was very warm, welcoming, and receptive to the information.
One of my goals for this opportunity was to recognize the role genetic counselors can play in the field of international disability and better understand the challenges individuals with disabilities and their families face in other countries. There is a lack of resources in Nicaragua in general, not to mention for those with disabilities. With only one genetic specialist, genetic testing is widely unavailable unless a patient travels to another country for services.
Another one of my goals was to gain more experience with other healthcare providers and specifically in the setting of international disability. I was able to observe psychologists, physical therapists, speech/language pathologists, and others provide services and recommendations to the patients as well as the staff of Tesoros de Dios. I know that the knowledge I gained there can be applied to the patient care that I will provide in the U.S.
The Nicaragua travel opportunity truly provided a basis for understanding international disability challenges, the lack of resources many countries have, and how genetic counselors can potentially play a role in the field.
--Randa Newman, genetic counseling student