Newborn Screening Family Stories:
Evan's Story

Evan baby Evan young adult

Eighteen years ago, when I was only three days old, I became very sick. I couldn't communicate my problems beyond my cries, I did not have a voice of my own, so my parents did not know what was going on. My parents did not know the severity of my sickness. In the afternoon my parents received a call from the hospital explaining that the reason for my sickness was my metabolic disorder called Galactosemia. Newborn screening caught me at just three days old to keep me healthy enough to live a normal life. Newborn screening acted as the voice that I didn't have at such a young age.

When I think back to that story of being diagnosed I always wonder what would have happened if newborn screening did not catch that I have Galactosemia. I can imagine how hard it is for parents to deal with not knowing the problem that their child is facing. With all newborn babies it is hard to tell what is going on. The communication that these babies use is so limited that it is very possible to confuse the meaning of the cries that these babies use. For example my parents could have easily mistaken my cries and my sickness from my first three days as a sign that I needed more milk which would have likely resulted in death or in other harmful consequences. Luckily for me newborn screening saved my life and it saved my family from going through a difficult situation of losing their first born child.

Because of newborn screening I have a promising future ahead of me. I have made plans for next year to attend Marquette University. Newborn screening saves lives and families.

Audio version of above transcript (WAV file: 1 minute 54 seconds)

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