Working with Family Advocates in Newborn Screening

Working with Family Advocates in Newborn Screening

Public Square #6Published September 20, 2017
The Prompt: 

On September 21, 2017, Baby's First Test hosted a webinar on how newborn screening programs can effectively collaborate with and support family advocates. During the webinar, Amy Gaviglio, MS, CGC from the Minnesota Department of Health discussed Minnesota's experience supporting family advocates, and Shanna Quimby shared her family's advocacy journey and her work through Gavin Flying for a Cure. You can watch the full webinar here.

After hearing Minnesota's and Shanna's experience working together, we want to hear from you! How can newborn screening programs collaborate and partner with families? What are the challenges that you've experienced? What have been the successes?

5 comments
The Question: 
How can newborn screening programs collaborate and partner with family advocates?
The Question: 
How can newborn screening programs collaborate and partner with family advocates?
Join the conversation. Share your thoughts.
FLAG
Adrianna Evans

Very excited to participate in the webinar!

FLAG
Natasha Bonhomme Project Director/ Co-Principal Investigator at Baby's First Test

Welcome everyone! I am Natasha Bonhomme, Director of Baby's First Test and am moderating this public square on the importance of partnership between NBS programs and family advocates. We are looking forward to hearing from you about what you have seen work and what what are some emerging opportunities when it comes to NBS programs and advocates working together. Even if you can’t participate in the September 21 webinar, please share your thoughts and ideas. We know there are many examples of how NBS programs and family advocacy groups have been able to work together and learn from each other to improve newborn screening. We want everyone to feel welcome to share their questions, stories, and ideas for stronger partnerships. We are looking forward to hearing from you.

FLAG
Pattie Browne

There needs to be more public awareness. Having OBDocs hand out a pamphlet in a congratulations kit is not enough, we need to talk about it, maybe start with high schools, PSA. Celebrity spokesman.

FLAG
Jolene Summer

My daughter was born November 24th 2015,a week later we got an emergency call to go to the hospital because something on her newborn screening came back positive. I was threatened with cps if I was not to automatically take my daughter in(of course I was taking her in!) It was very traumatic. My daughter at only 7 days old had to get IV testing and was hooked to monitors and ended up badly bruised.The doctor's were stumped because physically she showed no signs of this positive result. Fast forward a couple of days of her being poked and prodded and I get a call "Albany switched the results of your child with another baby,we are very sorry.you're free to go." The whole time another poor baby had this positive result. and my daughter was fine. I haven't told this story and we did not pursue a lawsuit-even though we should have.I would however like to know if anything has been done to prevent this from happening again.Albany should feel lucky that we did not sue
.

FLAG
Natasha Bonhomme Project Director/ Co-Principal Investigator at Baby's First Test

Thank you Jolene for sharing your story. First we are happy that your daughter is healthy and didn't have the condition. Going through so much so young understandably was hard to see. While state programs have helped saved thousands of lives, they still work everyday to improve their systems, from how samples are collected in the hospital/ birth center to running the tests, to communicating with families and health specialists. Though not common, sometimes things don't go as planned.
These stories are important teaching/ awareness building opportunities for everyone involved in newborn screening. We hope families feel comfortable to ask questions and raise concerns and that programs and others in newborn screening have opportunities to gain feedback and share critical information about the screening process all towards a goal of quality improvement for the benefit of all, especially the babies and families. *We did reach out to New York and notify them of this post.

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