ST. LOUIS - About 300 babies born each year in the U.S. are sent home from the hospital with serious heart defects that went undetected by ultrasounds during pregnancy and examinations after birth. Legislation in Missouri and Illinois would require hospitals to give every newborn a pulse oximetry test to measure their blood oxygen levels. A low number means the baby would be given a more thorough cardiac exam.
Doctors estimate that 1 percent of newborns have critical congenital heart defects. In the last five years in Missouri, more than 50 infants died with undiagnosed heart defects, according to the state health department. Babies with the most deadly heart defects can appear healthy for the first few days of life but will require surgeries or catheters within a few months.
Pulse oximetry tests in adults are taken from a clamp on the fingertip. In infants, doctors take the measurements from the hands and feet. The test is non-invasive, takes five to 10 minutes and the equipment is available in any hospital. St. Louis hospitals including Barnes-Jewish, Missouri Baptist, Mercy and SSM hospitals already screen every infant for serious heart defects. Proponents of the law, including the March of Dimes, are more concerned with small, rural hospitals that might not routinely provide the test.
The U.S. Department of Health and Human Services added critical congenital heart disease to its list of recommended newborn screenings in 2011. Every state has its own newborn screening laws about disorders from cystic fibrosis to sickle cell disease and at least have legislated heart defect tests. The screening fee per infant is $65 in Missouri and $88 in Illinois, which is usually covered by insurance, but more than half of the screenings are paid by the states for low-income families. The pulse oximetry test is expected to add $5 to $10 to that fee.
Tests for childhood diseases are typically added to newborn screening programs if they meet certain criteria -- the disease is relatively common, the test is available and accurate and a treatment is beneficial with early intervention. While the test can produce false positives, which lead to unnecessary follow-up tests, doctors say the heart defect screening is cost effective.
In Missouri, the Senate is expected to vote this week on the bill named for 4-year-old Chloe Manz of Lee's Summit. Chloe was born with four heart defects and was screened only after her mother, Kelly Manz, insisted something was wrong with her baby.
"She didn't look right to me. It was such a strong, horrible feeling," said Manz, 36.
Chloe's pulse oximetry score was in the 60s, while a healthy baby should score between 95 and 100. She had open heart surgery at 4 months old and is now happy and active.
"I mostly want people to know that if their hospital isn't doing it on every baby that they can ask for it," Manz said. "I just want everyone to have a chance like Chloe."
Most high-volume hospital nurseries will detect one or two babies with critical congenital heart defects each year, said Dr. George Van Hare, director of cardiology at St. Louis Children's Hospital.
Van Hare regularly sees babies with undetected heart defects coming to the Children's emergency room in shock and needing resuscitation. The lack of oxygen can cause brain, kidney and liver damage. Those babies would have had better outcomes if they had been tested for heart defects in the first couple days after they were born, Van Hare said.
"We will clearly be saving babies by implementing this very, very inexpensive technology," he said.
The legislation in Missouri is Senate bill 230 and House bill 274; in Illinois, House bill 2661. ___