A national newborn screening award presented to Stanton Berberich of the State Hygienic Laboratory honors not only Berberich, but Iowa's commitment to saving the lives of newborns.

Berberich, the laboratory’s program manager of Medical Screening, received the George Cunningham Visionary Award in Newborn Screening in March at the Association of Public Health Laboratories (APHL) Newborn Screening and Genetic Testing Symposium.

Members of the Iowa, North Dakota and South Dakota newborn screening programs join Stanton Berberich (center), program manager of Medical Screening, in celebration of his receipt of the George Cunningham Visionary Award in Newborn Screening.

The Iowa Newborn Screening Program is administered through the Iowa Department of Public Health in partnership with the State Hygienic Laboratory, which provides the laboratory support for the Program, and the University of Iowa Children’s Hospital, which provides the clinical follow-up and facilitation services for the Program.

APHL cited Berberich's and Iowa’s work to implement significant infrastructure improvements to their program. In 2005, Iowa was the first newborn screening program in the nation to establish a statewide same-day courier system that operates daily – including weekends and holidays – which allows specimens to be delivered to the laboratory every evening. To further reduce delays, a night shift was established in the newborn screening laboratory to immediately receive the specimens each evening, begin testing and continue throughout the night.

The process screens for inherited diseases, such as sickle cell anemia, cystic fibrosis, phenylketonuria (PKU) and a number of other disorders, with the goal of providing lifesaving treatment in identified cases. If left undetected or untreated, many of these conditions can cause devastating, irreversible health effects and even death. Some of these conditions are time-critical and can cause damage within the first days of life.

A Milwaukee Journal Sentinel article published in 2013 reported in a state-by-state comparison that Iowa was one of two states to meet national time-sensitive guidelines for 99 percent of blood samples in 2012.

Jelili Ojodu, APHL director of Newborn Screening and Genetics, said as far as he is aware, Iowa is the only state to have implemented such an extensive system to provide timely newborn screening results.

Besides being "one of the nicest individuals I've gotten to know," Ojodu said, Berberich was honored for his role in implementing those model practices.

While not every state could provide the same services, due to geographical distances and other factors, he said, "I think [Iowa] certainly sets the bar."

A national celebration in 2013 marked the 50th anniversary of newborn screening, which was first mandated in Massachusetts during 1963. This year marks the 50th anniversary of newborn screening in Iowa, which began in 1966.

The first step in screening begins at the birthing location where a few drops of blood are collected from the newborn’s heel. The blood spots are sent to the State Hygienic Laboratory Ankeny facility for testing, which can detect more than 50 disorders from five drops of blood.

Berberich explained that newborn screening is a system made up of many partners including those at the hospitals who collect and ensure the specimens are properly processed and transported to the screening laboratory; the courier; staff at the Hygienic Laboratory who perform the testing and reporting; staff at the UI Children’s Hospital who work with physicians and families to ensure timely and appropriate interventions are initiated when necessary; and staff at the Center for Congenital and Inherited Disorders within the IDPH for the proper administration of the program.

"Unless the proper interventions are initiated before harm occurs to the newborn, the testing has no value at all," he said. "Babies are born every day. Some will be affected by conditions we screen for; and some of those will be time-critical. We don't want to miss any of these kids, especially those with life-threating conditions."

Although each disorder is rare — occurring in from one in 3,000 births to one in 100,000 — recent figures show about 200 of Iowa's nearly 40,000 newborn screenings come back every year as presumptive positive, and of those, about 50 have a confirmed diagnoses.

Detected in time, treatments such as enzyme therapy, antibiotics or dietary changes can prevent physical and intellectual disability, or even death.

In early days of newborn screening, the few conditions that could be detected would not result in adverse effects until weeks after birth. A week-long delay in getting results for these conditions did not impact the newborn. But in recent years, with improvements in technology and treatments, the number of conditions that can be detected has greatly expanded. Some of the conditions that have been added are time-critical and can cause a baby's health to decline rapidly after birth.

As those conditions were added to the screening panel, Berberich realized that fundamental changes were needed to narrow the turnaround time to provide quicker screening results. He proposed to the state's Congenital and Inherited Disorders Advisory Committee adding the courier system and the overnight laboratory staff. Although proposed improvements required an increase in funding, the committee recommended implementation.

Iowa is a rarity in providing those services. Berberich sees the Cunningham award as validating the extra efforts provided in the state, and hopes other states will put those practices in place.

Berberich, who has been part of Iowa’s Newborn Screening Program since 1999, said, as the father of seven children and 21 grandchildren, he can appreciate what the program has done for families.

"In every case, we play a role in changing the outcomes for not only that child, but for that entire family," he said. "I feel blessed that I can give my time and career to doing that."