(LOUISVILLE, May 21st, 2004) -- A blood test is one of the first experiences of a newborn's life. It seems so simple at the time, but it can be critical to ensuring your baby's good health. And some people in Kentucky are saying state lawmakers are risking your child's life. Medical Reporter Lori Lyle reports.
In 2000, The Children's Health Act promised to help states fund expanded newborn testing.. The money was scheduled for a legislative vote on September 30th, 2001, but the events of 9/11 hijacked those funds. Since then, several states, including Kentucky, are still haggling over the cost.
Many people feel lawmakers are putting a price tag on life.
Michelle Kussman was overjoyed when her daughter Isabelle was born, "kicking, screaming, all her toes, all her fingers."
Four months later, Isabelle's feet are still going. She seems like a typical newborn, yet she's anything but typical.
All newborns have blood drawn for a simple test to screen for various disorders and diseases. But exactly which disorders and diseases are screened can vary enormously from state to state.
Indiana state law mandates over 30 different newborn screening tests. In Kentucky, babies get just four.
That's something Michelle and her husband, Bill, didn't realize. They found out, however, when moving from Kentucky to Indiana. And, thankfully, Indiana's expanded screening identified a genetic metabolic disorder called VL-CAD. It means Isabelle lacks an enzyme needed to break down fatty acids.
Now special supplements in Isabelle's diet keep fat from collecting around her heart. "If she doesn't eat for eight hours, she'll be dead," Bill says.
Deaths from VL-CAD and many of the other 60 metabolic conditions for which doctors can now test and treat had for years been classified as SIDS -- or Sudden Infant Death Syndrome.
In fact, experts now believe as many as 15 percent of SIDS deaths are caused by one of the disorders being identified with expanded newborn testing.
"Every state should be doing this," says Jamie Lazzaro. "I don't think babies are more important from one state to another."
Jamie and Tom Lazzaro started the push for expanded testing in Kentucky four years ago, after losing their son, Jim, after Jamie says he "never woke up from a morning nap."
Born December 8th, 1996, Jim lived only eight months, but what an impact he had. "It seems like maybe that's why we got Jim. Maybe that's what we were supposed to do," Jamie says.
Jim suffered the same treatable disorder that Isabelle has, but it was undetected.
"No parent should go through what we did," Jamie says.
Kentucky passed legislation in 2001, adding expanded screening, but on the condition that federal funds be used.
That doesn't make sense to Tom Lazzaro. "We have the technology, we have the method for detecting and treating. And yet, it's getting hung up in legislation."
According to Dr. Christopher Mescia, a pediatrician at Floyd Memorial Hospital, research shows such testing "helps prevent IQ loss, assorted brain damage."
Many states are coming up with state dollars. But Dr. Carolyn Bay, a Clinical Geneticist at UK Hospital, says most parents don't realize that "they don't have to wait for states to get funding going. These tests are available to every child currently. And parents can request their pediatrician order testing for them."
It costs between $20 to $80 bucks for a private lab to process the blood test. The problem is people don't know about it. Pediatricians say parents never ask about it, and parents say the information is never volunteered.
"Someone has to be an advocate for the child," Bill says. "Most parents don't know to ask the right questions."
The test may have already saved several lives in Indiana -- and that's not all. "It's not just lives that are saved, it's also quality of life."
Initially, money was in Gov. Fletcher's budget to buy the equipment needed to process the tests. But a special session to get a plan passed has yet to be scheduled. Until then, if you do use a private lab, check with your insurance company because many will cover it even if it is not a state mandate.