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Iowa Department of Health and Human Services

Iowa Newborn Screening Program - For Families

For Families

The purpose of screening for metabolic and congenital disorders in the newborn period is to enable the early identification of, and intervention for, at-risk individuals in order to prevent or lessen adverse health consequences such as intellectual and physical disability, serious illness, and death, with the overall objective of improving the quality of life for Iowans.

Iowa Newborn Screening Program Annual Report for Calendar Year 2021

September is Newborn Screening Awareness Month

Governor Reynolds has proclaimed September 2021 as Newborn Screening Awareness Month. You can see the proclamation by clicking here.

Did you know?

The Iowa Newborn Screening Program has three components - blood spot, hearing (Early Hearing Detection and Intervention – EHDI), and critical congenital heart disease (CCHD) screening. All Iowa newborns are screened for over 50 congenital or inherited conditions (unless the parents refuse). That’s over 36,500 babies a year. If 36,500 bassinets were placed end-to-end, they would form a line 21 miles long (or, from Des Moines to Adel)!  If you or your children were born in Iowa after 1964, you benefitted from screening provided by the Iowa Newborn Screening Program.

Newborn screening is more than a test. It is a system of care comprised of parents, hospitals, birth providers, courier service, laboratory, and follow-up agencies. Newborn screening is made up of laboratorians, nurses, doctors, genetic counselors, follow-up staff and more who are responsible for the most vulnerable among us.

Every year over 100 babies are identified with a live-altering or life-threatening condition through the Iowa Newborn Screening Program. Every one of these babies receive specialized care and treatments that enables them to live their best life.

Addition of Spinal Muscular Atrophy to the Iowa Newborn Screening Panel

One of the most important tests a newborn infant will have performed is the newborn blood spot screen.  One small blood sample detects over 50 conditions, and this number is growing.  Most of these life-altering and life-threatening conditions are completely undetectable at birth without the newborn screen.

One such newborn blood spot screening condition is spinal muscular atrophy (SMA).  SMA is an inherited condition that results in skeletal muscle weakness.  If babies with infantile (newborn) onset SMA are not treated early in the disease, worsening weakness can quickly lead to failure to thrive and worsening respiratory muscle weakness.  Without treatment, the infantile form of SMA typically leads to death in the first two years of life.  Untreated later-onset forms of SMA lead to physical disability due to muscle weakness.

Starting September 13, 2021, the state of Iowa will begin screening for SMA.  The current process for newborn blood spot screening will not change.  All blood spot samples will be run through an additional testing process at the State Hygienic Lab to screen for SMA.

Dr. Katherine Mathews, Medical Consultant for the Iowa SMA Newborn Screening Program is encouraged by this advancement, “I am looking forward to having Iowa join the other states offering newborn screening for SMA. We are so happy to have specific medications for SMA and know that earlier treatment leads to better outcomes for children with this disorder.  Newborn screening has the potential for dramatic impact on the lives of affected babies.”

Iowa’s Newborn Screening Program is an evolving system which greatly impacts the lives of infants born in our state.  With continued efforts all newborns born in the state of Iowa will have the opportunity to live their lives to their full potential.

For more information

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