Parental Perspectives on
Newborn Screening

Parental Perspectives

An ALD diagnosis is terrifying at first, but knowledge empowers families to save their child’s life. We have heard it said many times, “I am just a Newborn Screen Parent.” We are here to tell you there is NO SUCH THING! EVERY STORY MATTERS!

The trauma of your experience is real and valued, no matter where you sit on the spectrum of clinical presentation/phenotype of ALD!

Those that advocate against newborn screening argue that the trauma at time of diagnosis, in cases where a child might never develop symptoms or disease, justifies the lack of newborn screening.

THERE IS NO TRAUMA GREATER THAN BEING TOLD YOU HAVE TO TAKE YOUR CHILD HOME TO DIE WHEN A SUCCESSFUL, QUALIFIED TREATMENT IS AVAILABLE!

With every positive screen, you identify not only the child being tested but also the siblings, cousins, uncles, and fathers. NEWBORN SCREENING MEANS LIFE OR DEATH!

Parents want newborn screening. Here is what they have to say!