Caring for my child with ADA-SCID

You’re listening to the voice of Caroline Nachem who currently lives in VA with her husband and two children. She graduated from Old Dominion University in Virginia with a degree in history and studied anthropology. She became a stay-at-home mom when her daughter was born, and shortly after was inducted into medical motherhood. She spent the next several years caring for her daughter as she had ups and downs in her health. She also gave birth to her son as well who are now 7 and 5. In the podcast episode, Caroline will share her story and her advice to new moms in a similar situation, caring for a child with a genetic condition. Her message “You’re not alone.

 

Interview Questions:

 

1. Your newborn was diagnosed with a condition through NBS. Can you tell us about how you found out about the screen and what happened next?
2. Could you share your process in caregiving to your child with SCID? Any advice for new moms?
3. Researchers discovered the test to screen for SCID and helped refined the treatments. What is one common myth about newborn screening research in SCID?
4. Before your child was diagnosed with SCID were you aware of NBS?
5. What do you think prospective parents should know about newborn screening?
6. How has being a member of NBSTRN changed your thinking on newborn screening?
7. What does NBS research mean to you?

 

To learn how you can help advance newborn research, advocate for rare disease screening and treatment, and learn about important discoveries, become a member of the Newborn Screening Translational Research Network by visiting our website at www.nbstrn.org.

 

Thank you for listening to this episode of Newborn Screening SPOTlight. If you like our podcast, please subscribe and share an episode with your colleagues, friends and family. 

 

Get involved! Stay informed! Help us advance discoveries! Together, let’s increase the impact of newborn screening research by listening to your stories.