Jack benefited from being born at a hospital that quickly sent his test to the state lab. Last year, 98% of the 6,240 blood samples from Riverside Methodist Hospital arrived at Ohio's state lab for testing within three days of being collected, the Journal Sentinel found. Jack is now a healthy and energetic 3½-year-old.

It is impossible to tell how many children have died or been negatively affected by late samples because test results are confidential. Although some children diagnosed early may still face health problems, experts agree that early treatment can dramatically improve the outcome of their conditions.

"Any time you have a condition that you know can produce ill effects, you want it to be diagnosed as soon as possible," said R. Rodney Howell, a professor of pediatrics at the University of Miami's medical school and chairman of the group that established newborn screening guidelines for the U.S. Department of Health and Human Services in 2005.

Babies vary greatly in how quickly they show symptoms. With a condition like galactosemia, a child must be treated before galactose builds up in the body, leading to infection, liver damage and brain damage.

After coming home from the hospital, Aiden Cooper continued spitting up and losing weight. When he was 2 weeks old, his mother gave him a bath and noticed a rash. Then she saw that his little stomach was puffed out, as if a balloon had been blown up inside. She took him to their family doctor who checked him over, left the room then walked back in, his face pale. They were sent to a pediatrician. Aiden's heart was beating too fast and an ultrasound found that his liver and spleen were enlarged. An ambulance rushed him 2½ hours to Arkansas Children's Hospital in Little Rock.

For the next two weeks, teams of doctors tried to sort out why the baby was so sick. He received a spinal tap, feeding tube and IVs. They switched his formula, trying goat's milk, then soy. His condition began to improve, but still no one knew he had galactosemia.

Shauna was at Children's Hospital with Aiden when a nurse from Arkansas Methodist back home called her cellphone. Apologizing profusely, the nurse said something about a test that had been lost but then found. Shauna didn't know what the nurse was talking about. A few days later Aiden was released from Children's Hospital with a tube inserted into a vein near his shoulder so he could continue to receive medication.

A lab report from Arkansas Methodist Hospital shows that Aiden's blood was collected Jan. 15, two days after he was born. The sample was not tested until 24 days later at the Arkansas State Laboratory in Little Rock. It took another week for doctors to tell Shauna the baby had galactosemia.

Lana Williams, chief nursing officer at Arkansas Methodist, would say only that the hospital follows state guidelines in handling samples.

Recommendations not met

Since 1999, groups of medical experts assembled and funded by the U.S. Department of Health and Human Services have recommended that the nation's newborn screening programs be standardized, with policies set so every baby is effectively tested in a timely manner. That hasn't come close to happening, the Journal Sentinel analysis shows. State programs vary widely — from the days labs operate to how and when samples are delivered.

While more than half the country has regulations that require hospitals to send blood samples for testing within 24 hours of collection, the Journal Sentinel could find no instance where a hospital was penalized for ignoring the rules. State labs and public health departments rarely have legal authority to enforce screening regulations.

There also are no newborn screening standards for hospitals under the Joint Commission, an independent medical association that sets patient care standards and accredits the majority of U.S. hospitals.

Although 36 states recommend overnight or courier delivery, only eight require it by law. Even when they do, there is little evidence the laws are working outside of a handful of states.

In New York, for example, samples must be sent to the testing lab within 48 hours of collection. Almost 106,000 samples from babies in New York did not meet that mark last year.