The Importance of Newborn Screening

Newborn screening has affected the lives of millions of families nationwide and is one of the country's most successful preventative health programs. Being diagnosed with severe hemophilia B at birth, I have lived all my life knowing my disorder. However, the same cannot be said for everyone. While some states screen for more diseases and disorders than others, it can impact families unaware of their newborn child's condition. 

The only reason I was diagnosed with hemophilia at birth was because my older brother also received the same diagnosis, but it was several months after he was born. In Georgia, hemophilia was not screened for in newborns, so my parents left the hospital assuming their firstborn child was perfectly healthy. Since hemophilia is an internal bleeding disorder, my parents did not start to notice problems until they started to spot random bruises on my brother.  Others outside my family began making assumptions that he was being beaten. My parents had to take him back to the hospital for doctors to diagnose him several months later, but by that point, he had already developed target joints in his ankles from the high number of bleeds he suffered without proper treatment.

Fortunately, my brother and I have lived prosperous lives despite the differences in the early portions of our childhood. Yet, when the opportunity presented itself for me to learn how to begin advocating for the rare disease community, I was excited to start my advocacy journey. I went my entire childhood without speaking about my bleeding disorder to strangers or my closest friends, so becoming an advocate, let alone talking publicly about my condition, was a massive step for me. I had gotten to the point where I no longer feared the responses of other’s opinions regarding my hemophilia and cared more about being true to myself and wanting to make a positive impression on the community.

I took part in the YARR Leadership Academy for several months to understand the nuances and roles of advocacy. Part of our final assignment was to speak on a specific topic, and I chose newborn screening. Even though I am far from being a newborn child or having one, I thought it would be essential to highlight the topic because of its importance for families. I could only imagine what other families endure when they notice something wrong with their child. More should be done to screen for more diseases and disorders, especially with the growing number of rare diseases each year.

Jordan Howard