What is Newborn Screening?
Newborn Screening looks for serious developmental, genetic, and metabolic disorders that would not otherwise be detected in time for life-altering treatment.
For these diseases early detection and treatment is essential to preventing irreversible mental or physical disabilities, even death.
Just after birth, a few drops of blood are taken from a baby’s heel and placed on a card that is sent to the state’s newborn screening lab. The results are then sent to the baby’s
pediatrician and the hospital where they were born.
Newborn screening does not diagnose diseases, but identifies which babies need additional testing to confirm or rule out these diseases. Although rare, such diseases are treatable if caught early.
Unfortunately, the number of diseases a child is screened for depends on which state they are born in. Due to an inequity in each state's newborn screening program, children are not being diagnosed for many of these diseases. For children with these disorders, the earlier the child is diagnosed, the better chance the child has to survive.
Please Take Action now and help save the lives of future children born with these devastating diseases.
What to Expect...
No state includes all potentially fatal, but treatable,
diseases in its Newborn Screening Program. Currently, New York, Missouri and Kentucky are the only states that screen newborns for Krabbe Disease. If
you or someone you know is pregnant, speak with your doctor about what
diseases your state includes in their newborn screening program. You
can also learn what to expect from your state's program by visiting Baby's First Test.
You may also want to consider purchasing a Supplemental Newborn Screening Packet.
Through Supplemental Newborn Screening, you can ensure your newborn is
screened for more than 60 disorders at birth, including Krabbe,
regardless of where they are born.
Two Brothers Affected by Krabbe... Only One Chance at a Healthy Life
Marshall Wilson (6/15/09 - 3/5/16) was diagnosed with Krabbe Disease when he was 1 ½, just after the birth of his younger brother, Michael. Tragically, Marshall
was not diagnosed until the disease was already too far progressed for
him to benefit from the only available treatment, a cord blood
Since Krabbe is a genetic disorder, Michael was also tested for Krabbe
and diagnosed early, before he was symptomatic. Michael underwent a
transplant and is a healthy and active toddler.
The Wilsons are fighting to change that by advocating for Krabbe Newborn Screening in their state.