Tasting Tradition: Newborn Screening Around the Dinner Table

Tasting Tradition: Newborn Screening Around the Dinner Table

Public Square #7Published November 03, 2017
The Prompt: 

For many families, one of the most important parts of the holidays is sitting down together for a family meal. Turkey, ham, roast beef, pumpkin pie, mashed potatoes; these are a few seasonal favorites. But for many who have been diagnosed with a condition through newborn screening, traditional recipes for these foods may often be off-limits due to low protein, dairy free, or high fat diets, and other life-saving dietary changes. Though this can be challenging, we know there are plenty of home chefs out there who have cleverly cooked delicious meals everyone can enjoy!

How have you navigated family and cultural traditions during the holiday season or special occasions? Share your stories, tips, tricks, and favorite recipes below!

8 comments
The Question: 
How can individuals with newborn screening conditions and their relatives navigate family and cultural traditions during the holiday season or special occasions?

Public Square

A series of open discussions about newborn screening, for practitioners, policymakers and the public.

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The Question: 
How can individuals with newborn screening conditions and their relatives navigate family and cultural traditions during the holiday season or special occasions?
Comments are closed. Read the discussion below, or browse other discussions.
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Adrianna Evans

Welcome to the conversation, everyone! I am Adrianna (Annie) Evans, Program Coordinator on the Baby's First Test Team. I will be the moderator for this public square and I'm so excited to hear everyone's stories, tips, tricks, and recipes! I love cooking and food, so it will be a real treat to hear how the newborn screening community celebrates around the dinner table. We want everyone to feel welcome to share and build a useful resource in this discussion thread, so please join the conversation!

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Ash N John Bricker

There are many blessings in social media and the internet these days that allow those of us who have children with complex diets (my son has MSUD) to find awesome recipes that are safe for our kids. I have an entire Thanksgiving menu planned for my guy thanks to all the resources I’ve found through Facebook. I also have to give credit to the great medical food companies out there who make delicious, trustworthy, safe food for kids like mine. Being able to order my son some of these foods (although pricey, sometimes we splurge!) helps when we are in a pinch. Having access to a diverse selection of foods for him, whether homemade or purchased, is a wonderful thing and promotes inclusion at all levels. I cannot imagine him not being able to sit down at the table with us on Thanksgiving and not have a great meal of his own.

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Adrianna Evans

Hello and thanks for joining the conversation! It's great to hear that you've been able to find so many useful resources. Would you be willing to share either a recipe you plan on making for your son or a resource you've found? Some new parents might be looking for exactly those things to help them prepare for Thanksgiving too!

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aevans
If you missed our Newborn Screening Tasting Tradition Discussion Panel on this topic, please check it out on YouTube so you can still get all the info! https://youtu.be/sFUnn2IUs10
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Rosa Guerette

I think all states need to check for Krabbe disease because of a child called Hannah she died on December 28th of 2014. Since then two or three other children have died because they don't check for Krabbe disease at birth.

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Brittney Witte Hunsley

My oldest son was diagnosed with a rare genetic disease called Galactosemia through the newborn screening. He can't have many items including dairy, MSG, Organ meats, and beans. We have been able to find great substitutes for a lot of our cooking. Some we need to get out of town at bigger grocery stores, however our local ones are getting better at carrying a lot of items that are dairy free. It makes cooking for dinners and holidays easier and he is able to enjoy most of the items on the table.

Adrianna Evans's picture
ModeratorJanuary 16, 2018
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Adrianna Evans

Hi Brittney! Thanks for joining the conversation! It's great to hear that you've been able to find some products that work for your son. Would you be willing to share one or two of your favorite products?

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Adrianna Evans

Hello everyone! Thanks for your participation in this discussion. Keep an eye out for further resources coming out of this campaign and conversation. In the meantime, make sure you check out the recording of our panel discussion located in our Resource Center or on our YouTube Channel.

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Public Square

A series of open discussions about newborn screening, for practitioners, policymakers and the public.

Learn more