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.
Cassidie shares the story of her beautiful shining star, Alenna, who was diagnosed with Galactosemia.
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.
A mom, Michelle Thomas, talks about finding out her son had hearing loss. She highlights the need for accurate communication about conditions.
Do you have a newborn screening story you would like to share? Let us know!
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