Family Experiences
Learn from other families, in their own words, what their journey has been like after a diagnosis. Their stories not only give us valuable insight into how they manage conditions, but also reaffirm that none of us are alone. You can also visit the Baby's First Test Youtube channel for family stories and guides to support your family through the newborn screening process. Do you have a newborn screening story you would like to share?
Susan Mays shares the story of her daughter, Indie, who has Maple Syrup Urine Disease. Because of newborn screening, Indie received a timely and accurate diagnosis, began treatment, and prevented irreversible brain damage.
Ginny tells the story of her daughter's diagnosis with Medium-chain acyl-CoA dehydrogenase deficiency (MCADD). A simple heel prick saved her daughter's life.
Jessica shares the story of her son, Waylon, who has SMA Type 1.
Liz tell the story of her son, Elliot, who has Homocystinuria. Elliot was missed at newborn screening, which inspired Liz and her husband to become advocates for improving the newborn screening system.
Chadd shares the story of his son and their experience with Sickle Cell Disease.
Cassidie shares the story of her beautiful shining star, Alenna, who was diagnosed with Galactosemia.
Kiomara Gonzalez tells her family's story with Adrenoleukodystrophy. Her brother's life would ultimately save her son and nephew's lives almost 25 years later.
Mike shares the story of his two sons. After a six-month diagnostic odyssey, Mike's sons were finally diagnosed with Hunter Syndrome. Had they been diagnosed as newborns, their condition could have been much more manageable.
Coco tells the story of her daughter, Reese, who was diagnosed with glutaric academia type 1. Now 13 years old, Reese is like any other teenager and could not be happier.
Charlotte Barret-Weber tells the story of her son's diagnosis with Mucopolysaccharidosis Type 1. Because of a timely diagnosis through newborn screening, her son was able to receive early treatment and have the best chance at living a normal life.
Kristen Lubliner tells the story how newborn screening saved her daughter's life twice with a timely diagnosis of phenylketonuria and transient tyrosinemia.
Scarlette Shirley tells the story of her daughter's timely diagnosis with congenital hypothyroidism. Her daughter is now thriving with the proper thyroid medication.
Taylor Burch shares the story of her son's diagnosis with Isovaleric Acidemia. Thanks to newborn screening, he has a chance of living a perfectly healthy and normal life.
Ashley Bricker tells the story of her son, Johnny, who was diagnosed with two newborn screening conditions. Johnny lives with MSUD and CF.
Ashley Bricker tells the story of her son, Johnny, who was diagnosed with two newborn screening conditions. Johnny lives with MSUD and CF.
Billy Werner tells the story of her grandson, Lucas, who was born with Critical Congenital Heart Disease
A mom, Michelle Thomas, talks about finding out her son had hearing loss. She highlights the need for accurate communication about conditions.
A mom, Amanda Schneider, discusses how her son was quickly diagnosed with hearing loss and began early intervention.
A mom talks about her son's diagnosis with hearing loss. Thanks to newborn screening, he started early intervention and his family was connected to valuable resources.
Shannah Hudson discusses her daughter Emmalyn's diagnosis with Glutaric Acidemia Type 1. Thanks to newborn screening, Emmalyn's condition is being managed.
Megann Reames tells the story of her son's diagnosis with congenital hypothyroidism. He is thriving under the care of his pediatrician and endocrinologist.
Kay Kelly discusses her experience learning of her son's diagnosis with MCAD and learning about what that means.
Do you have a newborn screening story you would like to share? Let us know!
Looking for more specific information?
Find more information about a specific condition or state
Find a condition 
What your state offers 
Was this Helpful?
Your input helps us improve the site for parents and practitioners. Leave us feedback about this page.
Was this page helpful?