When Zach Zwirlein took the field at the University of Iowa's Kinnick Stadium on Nov. 23, it was an extraordinary event in a relatively ordinary life, made possible with a process that began shortly after his birth.
During the Iowa versus Michigan game, the 13 year old escorted the team onto the field as the Kid Captain. Zwirlein is one of 14 Iowa children who are honorary captains for this season's Iowa football games. Each child overcame significant health issues with the assistance of the University of Iowa Children’s Hospital. In Zwirlein's case, he also had the State Hygienic Laboratory and the Iowa Department of Public Health on his team.
One month before Zwirlein was born in November 2000, the Iowa Newborn Screening Program added medium chain acyl-CoA dehydrogenase (MCAD) to the list of disorders it detects. MCAD is an inherited condition in which the body cannot convert certain fats to energy. If left untreated, babies with this condition can develop serious health complications and sometimes die.
Zwirlein is the first child born in Iowa with MCAD, detected with the few drops of blood that were collected when he was little more than a day old. The blood sample was sent for screening at the Hygienic Laboratory’s Ankeny facility.
Today, Zwirlein follows a special diet and takes medication to remove the toxins that can build up in his body. He is active in sports and is a top performer in academics, none of which would have been possible if not for newborn screening.
Iowa program leads nation
Like Zwirlein, the Iowa Newborn Screening program is a top performer. The Iowa Department of Public Health oversees the program, and contracts with the Hygienic Lab for the screening process and with the Children’s Hospital for follow-up services for the families and physicians.
A comprehensive special report published by the Milwaukee Journal Sentinel on Nov. 16 cites Iowa as having a model program to save the lives of babies and limit their exposure to the risks associated with inherited conditions.
When a baby is between 24 and 48 hours old, a few drops of blood are collected by pricking the heel. The drops are placed on a special collection card, which is sent from the birthing facility to the laboratory that conducts the screening for potentially life-threatening conditions.
The Milwaukee Journal Sentinel story focuses on the consequences to the health of babies when the transportation of their blood spot specimens is delayed and when laboratories do not conduct newborn screening seven days a week. The paper reported that, “Federal guidelines say blood samples from hospitals should take no more than three days to arrive at the lab.” But only Iowa and Delaware met that requirement 99 percent of the time in 2012, according the paper.
Terri Snell transfers newborn screening specimens onto a specialized card that is used to detect cystic fibrosis.
Additionally, Iowa ranked first out of the 26 states that provided data for this article in transporting specimens to the laboratory to begin the screening process. In 2012, the blood spots of 67 of the 37,737 babies (0.18 percent) born in Iowa took five days or longer to reach the laboratory. In contrast, the state with the worst performing program in the nation reportedly had specimens from 12,986 out of 77,995 babies (16.65 percent) reach their laboratory in five or more days.
In 2005, Iowa began its unique around-the-clock system that is responsible for the stellar results. The courier (CDS of Iowa) goes to every hospital in the state every day of the year to pick up these specimens. They are delivered in the evening of that same day to the Hygienic Laboratory in Ankeny where the nightshift begins to process them. If there is a presumptive positive, the Hygienic Laboratory personnel contacts the UI Children’s Hospital follow-up staff so that physicians and families can be notified immediately for evaluation and further testing. If interventions are necessary, treatment can be initiated as soon as possible.
CDS, the Hygienic Laboratory and the Children’s Hospital all work seven days a week, 365 days a year to provide this life-saving service for Iowa babies and their families.
A reason to celebrate
This year is the 50th anniversary of the nation's newborn screening program. The Iowa legislature approved the state program in 1965, and it began testing for phenylketonuria or PKU the following year.
Today, the Hygienic Laboratory screens for 29 core conditions and can detect more than 50 congenital and inherited disorders. In the United States, more than 4 million babies are screened annually and thousands saved from death or disability. Newborn screening is often cited as the most successful public health program in the country. But there’s still room for improvement.
When newborn screening began 50 years ago, there was a window of opportunity of a week or more to carry out the screening process and initiate treatment before damage from PKU affected the baby, said Stanton Berberich, Ph.D., Hygienic Laboratory program manager of Newborn Screening. As newborn screening programs expanded and the number of disorders being screened for increased, this was no longer true. For several of the disorders being screened for today, the baby is at risk of harm at birth.
"We don't have a 'safe' window of time anymore," Berberich said. "We shouldn’t be thinking that way. We should be thinking in terms of risk and reducing that risk as much as possible by reducing the time the baby is exposed to harm."
Berberich's ultimate target is to reduce that risk by enabling blood spots from all babies born in Iowa to reach the Hygienic Laboratory the same day they are drawn so that testing can begin immediately. For now, the Hawkeye state can celebrate leading the nation in giving babies the best possible start.