Traveling to Nicaragua

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

Elective Rotation: Psychiatry

Attention-deficit/hyperactivity disorder, bipolar disorder, generalized anxiety disorder, major depression, obsessive compulsive disorder, schizophrenia, and substance abuse/dependence.  These are all psychiatric illnesses and are all relatively common.  In fact, if you go through someone’s family history you will more than likely run across at least one family member with a history of mental illness.  But how many of them can be seen running in families and have a known genetic component?  If you said all of them, you are correct.

Most of our training as genetic counseling students is focused on less common diseases with better characterized genetics: cystic fibrosis, Lynch syndrome, neurofibromatosis 1 & 2, sickle cell anemia, etc.  However, we all invariably encounter families containing members with more common diseases, such as cancer, diabetes, heart disease, and, of course, mental illness.  While we do receive training in discussing the genetics of these conditions with patients, we rarely get to see patients for whom these diseases and how they affect their families are a main concern. 

Cincinnati Genetic Counseling Program

As a person whose life has been tremendously impacted by mental illness in many ways, I have been especially interested in learning more about these conditions. I was also interested in learning about the experiences of individuals and families affected by these conditions, including  ways to help people cope with mental illness and decrease the stigma surrounding mental illness.

One of the greatest aspects of the University of Cincinnati’s genetic counseling program is that we have the option to do an elective rotation in our second year.  An even better feature is that we have the opportunity and the support to create a rotation if we have a specific interest.  After discussing my interest in psychiatry with our program faculty, I talked to the director of the Division of Psychiatry at Cincinnati Children’s who was very interested in the idea of an elective rotation and helped me set up a 5-week observational rotation with a few psychiatrists.

During my rotation, I shadowed three psychiatrists in very different settings.  I was in a general pediatric psychiatry setting, the Tuberous Sclerosis clinic, and an inpatient unit for children with both psychiatric diagnoses and developmental disabilities.  I saw a total of 19 patients outside of the inpatient unit with a wide variety of psychiatric diagnoses, averaging three per patient.

I learned quite a bit about different psychiatric illnesses: how they are diagnosed, how they present, and how they are treated.  Along those same lines, I was able to create a resource for myself and others containing a list of commonly prescribed medications and what they are primarily used to treat.  During my rotation, I picked up as many resources as I could find in the form of flyers, newsletters, and pamphlets that are specific to the psychiatric services at Cincinnati Children’s.

I hope that my experience in psychiatry and in setting up the rotation will inspire others to pursue a similar rotation.  As psychiatric genetic counseling becomes more widespread, it will be easier for others to get involved in talking to families about the genetics of mental illness.  For now, though, I think it is important that we start that conversation with psychiatry and really show them our interest in merging the two fields.

- Meghann Reardon, second year student