My Experience Working with Sickle Cell

One of my favorite aspects of Pitt’s program is that it encourages us to hold a relevant work position throughout our two years here. Having spent some time “in the real world” before making the plunge back into school, I came to appreciate that there are skills and lessons best learned outside of the classroom. Ultimately, Pitt is training us to excel as genetic counselors. Our work positions provide an additional avenue to build vital professional skills.

Children's Hospital of Pittsburgh 

As a dual degree (MS/MPH) student, I am fortunate to have found a work position with a similar dual nature. Each week, I split my time between the Pediatric Sickle Cell Department at Children’s Hospital of Pittsburgh (CHP) and the Children’s Sickle Cell Foundation (CSCF). These two groups work collaboratively to provide comprehensive care to children with sickle cell disease and to their families. It is a true model of public health, addressing the physical, emotional, and social well-being of this community. Through working with both teams, I have learned ways to address common issues such as transportation to appointments and communication with schools about missed days due to illness. These are things that may get overlooked by health care providers but are real impediments to an individual’s management of their health.

In my student worker position at CHP, I am able to shadow appointments during clinic days. This augments the already robust clinical experience that Pitt provides. Through shadowing the Sickle Cell team, I get to learn about clinical management and genetic counseling for hemoglobinopathies (genetic disorders that are caused by variant forms of hemoglobin, the protein that carries oxygen around in our blood). My supervisor at the clinic, Dr. Hillery, encourages me to take advantage of all educational opportunities. In the spring, this included a talk on sickle cell pain by a visiting clinician, followed by a more intimate Q&A session. I also get to develop patient educational tools, specifically fact sheets about various hemoglobinopathies. Additionally, through my help with managing the Sickle Cell database, I have learned how to navigate the infamous Electronic Medical Record system. This was one less thing to learn when rotations started! Finally, you cannot be in Pitt’s Graduate School of Public Health without learning about Newborn Screening. My position provides me first-hand experience with this public health program through sending biweekly letters to parents whose babies have screened positive for sickle cell trait. We are currently evaluating the letter that western Pennsylvania sends out for this purpose, and my feedback has contributed to the revision process. I have been able to incorporate this into my thesis research, which will examine the impact of the notification letter on families’ understanding of sickle cell trait.  As you may be able to tell, there is no shortage of opportunities for learning at the clinic alone!

Newborn Screening

My second role is as a program assistant with CSCF. Here, I work with a team of Community Health Workers to coordinate activities and services for those within the sickle cell community. We offer programs such as swim lessons and math tutoring on the weekends, trips to plays, museums, and amusement parks throughout the year, and special holiday events. One of the highlights of my year has been our Season2Give event where the children were able to pick out gifts for their siblings, which we as “Santa’s Elves” wrapped. All these events provide a wonderful opportunity to get to know families in a context beyond the clinic. CSCF additionally performs a patient advocacy role, which includes assisting with the development of Individualized Educational Programs and providing assistance with meals and transportation to families when needed. As a future genetic counselor, I am so appreciative to be learning how to navigate the logistics of these crucial support services.

Time is one of your most precious resources in graduate school. While work can sometimes seem like one more thing to try to cram into an already packed schedule, my work position has provided me with some of the most valuable (and fun!) experiences of graduate school. As I continue working towards my career as a genetic counselor, I am excited to see how many other ways my work with this wonderful team can help me build my professional toolkit.

Caitlin Russell