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?
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.
Billy Werner tells the story of her grandson, Lucas, who was born with Critical Congenital Heart Disease
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 be 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.
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!
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