Hola!
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
