New mom Theresa Gottwald knew something was wrong with her baby boy when he was only 2 days old.
He would not eat, despite her trying various methods suggested by lactation consultants. And after she tried to feed him milk multiple times, he became "cold and lifeless-like," she said.
She prepared to take him back to the doctor's office, but before she could get out the door, the baby's physician was already calling to tell her to return to the medical offices as soon as possible.
Little did Gottwald know that a blood sample taken from her son Leo's heel 24 hours after his birth and sped by courier to the Iowa State Hygienic Lab in Ankeny had been tested and showed an abnormal result.
Those quick actions determined that her baby's organs could not metabolize galactose, which is found in milk. Leo was soon diagnosed with a severe form of classic galactosemia, a disorder that prevents a person from breaking down one of the simple sugars in milk.
"He will never grow out of it," she said.
Now a generally healthy 5-year-old who has to follow a careful diet, Leo Lammers attends preschool in Bettendorf and lives with his mom and her husband in Blue Grass. Gottwald is thankful that she knows how to handle Leo's genetic disorder and that it was found quickly by the health providers at the hospital and the state lab.
That may not have been the case if they lived in another part of the United States, though.
In a special report titled "Deadly Delays," the Milwaukee Journal Sentinel newspaper showed this past fall that Iowa and Delaware are the only two states in the U.S. that get blood samples from babies and quickly transport them to a lab for analysis as required by federal law.
While all states may take the samples, the report found that how and when they are transported to a lab varies widely across the nation.
The Iowa State Hygienic lab is centrally located in Ankeny for what is called the Newborn Screening Program. The lab operates in partnership with the Iowa Department of Public Health in Des Moines and the University of Iowa Children's Hospital in Iowa City.
Developed 50 years ago, newborn screening is an accepted way of detecting any of some 50 disorders that are metabolic and hereditary in nature.
When a child is born in Iowa, a blood specimen is taken when the baby is 24 hours old. Federal guidelines require that no more than three days pass before the baby's blood sample is delivered to a lab for testing purposes.
Iowa and Delaware were the only states that met that measure 99 percent of the time in 2012, according to the Milwaukee newspaper's study.
The newspaper said that the Iowa program is the best of 26 states when it comes to transporting specimens to the lab in a timely manner. That happens in the same way with all 99 counties in the state.
For example, when Leo was born at 8 p.m. on a Tuesday in 2008, a specimen was collected by 7 a.m. Thursday. It was delivered to the State Hygienic Lab by 11 p.m. The night-side staff tested the specimen and reported the abnormality to the daytime staff.
Then the pediatrics staff at the University of Iowa Hospitals & Clinics tracked down the physician and the boy's mother, Gottwald. By that Friday afternoon, Leo had been seen by his physician and was in neonatal intensive care.
"All of this was accomplished in the third day of life for Leo," said Stanton Berberich, the program manager for medical screening at the state lab.
Why so efficient?
The Newborn Screening Program is so effective in Iowa because statewide processes have been developed that work very well in terms of accomplishing the necessary tasks, Berberich said.
Also, Iowa's program runs seven days a week, 24 hours a day, including holidays. The Milwaukee newspaper report tracked all states, showing that the state lab in Illinois, for example, is open for testing five days a week.
Iowa's Berberich noted that lab results depend on good specimens being taken in the first place.
Some conditions — such as galactosemia — put babies at risk very quickly while others need time to develop, he explained. The reality that babies are born every hour of every day makes the current Iowa program the most sensible when it comes to meeting requirements.
How it's done
A small bit of blood is collected by a heel prick on the 24-hour-old baby, said Meg Neal, the manager of the BirthPlace at UnityPoint Health Trinity in Bettendorf. The blood samples then dry on filter paper.
The screening is actually three tests that take about 15 minutes: One is for metabolic and hereditary disorders, one is for hearing and one is for congenital heart disease.
The blood sample for the metabolic and hereditary disease screening is taken by courier and tested at the Ankeny lab while the other two tests are completed at the hospitals where the samples are taken.
Metropolitan Medical Lab actually conducts the testing at the Trinity Bettendorf BirthPlace, Neal said. "It's just a prick of blood and then they send it off." The lab staff is at the hospital 24 hours a day, seven days a week.
Parents agree to tests
Parents are very agreeable to the tests, Neal said.
That's also the case at Genesis Health System, based in Davenport. "We seldom have families refuse or provide difficulty for us," said Deb Renner, who has worked in obstetrics since 1977. "Once in a while we have a mother who wants to go home less than 24 hours after the birth, but when they hear why we want to do the tests, they agree."
Renner added that it is "very, very" rare when families refuse the test, saying, "Most everyone does understand the importance."
As for Leo Lammers, he is learning how to be precise with his diet, which cannot contain milk, dairy products or derivatives of those items. Leo's mother painstakingly watches his diet choices and so does the staff at Our Savior Lutheran Preschool in Bettendorf.
"He's very innocent, but he also is learning," Gottwald said. "The other day I overhead him being offered some food and he said, 'I have to ask my mom first if this is safe for me.'
"I was so proud of him."