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The nation celebrates
50 years of saving babies
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The nation celebrates 50 years of saving babies

Pet owners might find their future veterinarian is Zach Zwirlein, a teen with high aspirations who would have faced an uncertain fate if not for the Iowa Newborn and Maternal Prenatal Screening Program.

Zach was the first baby in Iowa diagnosed through the Newborn Screening Program with medium chain acyl-CoA dehydrogenase, known as MCAD deficiency, just one month after screening for the rare genetic disorder was added to the program.

"There are no words to express how grateful I am," Zach's mother, Alicia Fuller, said of the test, which came back positive for MCAD just days after Zach's birth in November 2000. "My son probably wouldn't be with us today without it."

Zach Zwerlein

The Newborn Screening Program is a partnership between the State Hygienic Laboratory, University of Iowa Children's Hospital and the Iowa Department of Public Health. It starts when a newborn is still in the hospital. Following a heel stick, a couple drops of blood are collected on a filter paper card. Once that card dries, it is sent via courier to the Hygienic Laboratory in Ankeny where the screening process takes place, seven days a week, 365 days a year.

An estimated 12,000 babies are born annually in the United States with a condition detectable by newborn screening. This year was the 50th anniversary of newborn screening, which is considered one of the most successful public health programs and is made available to babies born in every state.

Robert Guthrie, Ph.D., M.D., developed the first newborn screening test for phenylketonuria (PKU) after his niece was diagnosed with the genetic disorder at the age of 13 months. Born in 1958 in Minneapolis, the young girl appeared healthy at birth, but developed cognitive disabilities that could have been prevented with a special low-protein diet.

Guthrie devised a way to collect from infants a few drops of blood that are dried on a filter paper card to allow easy transportation to a laboratory for testing. Massachusetts was the first state to implement a screening program in 1963. More states followed and programs gradually expanded to include other inherited, treatable conditions.

In Iowa, the State Hygienic Laboratory began providing PKU testing services in 1966 to the Department of Pediatrics at the University of Iowa.

Stanton Berberich, Ph.D., Newborn Screening Program manager for the Hygienic Laboratory, said Iowa now screens for a core panel of 29 disorders and may detect an additional 26 on a secondary list.

Iowa mandates the screening for newborns, though parents can opt out. In most cases, parents would be unaware that their child suffers from a condition until it is too late, Berberich said. Caught in time, however, medical intervention, antibiotics or dietary changes can prevent disability or even death.

This year, Iowa began a pilot program to screen for severe combined immunodeficiency (SCID) commonly known as the "boy in the bubble" disease, a deadly disorder in which babies are born without an immune system. Bone marrow transplants can treat or even cure the disease.

Berberich said about 18,000 babies have been screened so far, with the test set to be officially included in the program on July 1, 2014. SCID is a rare condition that occurs in less than one in 60,000 births.

In addition to the nearly 40,000 babies screened in Iowa every year, the Hygienic Laboratory's Ankeny site also provides laboratory support for an estimated 12,000 babies born in North Dakota and 13,000 babies born in South Dakota.

Iowa brothers Jonathan (left) and Joshua Stanfel pose with Rep. Art Staed in front of the 50th anniversary display during University of Iowa Hill Day at the Iowa Capitol. The Iowa Newborn Screening Program detected phenylketonuria (PKU) in the brothers shortly after birth. Since then, they have followed a special diet that has prevented the potentially devastating effects of untreated PKU.

About 200 screens annually return as "screen positive," and of those, approximately 50 are confirmed.

Besides running tests, the Hygienic Laboratory is involved in educational outreach, including the "Putting Babies First" Facebook page. This page was jointly launched with the University of Iowa School of Journalism and Mass Communication for nurses, laboratory staff and families across the country.

Alicia Fuller, now living in Coal Valley, Ill., has been a firm believer in the screenings' value since her son's birth.

"Had we not had the newborn screening done, we never would've known that Zach had (MCAD deficiency)," she said, noting that he appeared to be a healthy baby.

Zach, 13, who stays on a high-carbohydrate, low-fat diet to control the condition, has been able to enjoy baseball, basketball, wrestling and other sports, his mother said, and wants to take care of animals in his future career.

Berberich said outcomes such as Zach's demonstrate the importance of the screenings that go far beyond monetary savings.

"We see the opportunity to intervene at birth and change the course of that baby's life," Berberich said. "There is a far greater gift than the health care dollars that are saved. Reduced costs are minor compared to the contributions these kids will make to society."