Memphis couple who lost baby hail state law requiring screening of newborns for heart defects
By Tom Charlier
Posted: Jan. 31, 2013
After a pregnancy and delivery that were free of complications, Holly and Michael Goughnour celebrated the birth of their first child ? a “beautiful baby boy,” his mother recalls, who weighed 9 pounds 5 ounces and appeared healthy and normal.
But as it turned out, Grant Michael Goughnour was not healthy at all. Only 17 days after his birth, he became sickly and struggled to breathe, prompting a rushed trip with his parents to Baptist Memorial Hospital-Memphis.
It was too late. A rare birth defect known as truncus arteriosus led to heart failure.
“He died in my arms on the way to the hospital,” Holly Goughnour said.
That experience in 2002 helps explain why the Goughnours, who since have had three healthy children, welcomed the passage of a Tennessee law that took effect last month. It provides for mandatory screening of newborns for congenital heart defects.
The law requiring so-called pulse-oximeter screening was “parent-driven legislation,” said Dr. Jean Ballweg, cardiologist at Le Bonheur Children’s Hospital in Memphis. Tennessee last year joined a growing list of states ? California, Connecticut, New Hampshire, West Virginia among others ? in approving the screening measure. Arkansas and Mississippi have yet to pass such a law.
The screening measures the saturation level of oxygen in the blood. A low saturation level can signal any of seven critical congenital heart diseases, including truncus arteriosus, a defect characterized by a single blood vessel ? instead of the normal two ? coming out of the left and right ventricles, causing oxygen-rich and un-oxygenated blood to mix.
Congenital heart diseases account for nearly 30 percent of the infant deaths caused by birth defects, according to the Centers for Disease Control and Prevention. Each year, some 300 infants are sent home from newborn nurseries with undetected critical congenital heart defects, the CDC estimates.
Of the 80,000 to 90,000 babies born in Tennessee each year, 85-95 typically have critical heart defects, according to the state Department of Health.
The pulse-oximeter screening is a low-cost, noninvasive test that’s proven effective. It involves a sensor typically placed on the infant’s foot and a photodetector to measure the light wavelengths that are passed through the tissue.
In addition to truncus arteriosus, the screening can detect the following six defects: hypoplastic left heart syndrome, tricuspid atresia, tetralogy of Fallot, total anomalous pulmonary venous return and transposition of the great arteries.
The screening has been recommended by groups that include the American Academy of Pediatrics, the American Heart Association and an advisory committee to U.S. Secretary of Health and Human Services Kathleen Sebelius.
It’s generally conducted 24 to 48 hours after birth, or just before discharge.
Babies whose blood has oxygen-saturation levels of 97-100 percent immediately pass the screening and are cleared to go home, while those with readings below 90 percent automatically fail and are referred for further, more intensive examination. Babies with saturation levels in the 90-96 percent range are further screened with a probe on the right hand, and, depending on that outcome, either pass or are referred for further evaluation.
The oximeter testing is not a “fail-safe screening method” and won’t detect all types of heart problems, said Ballweg. But it’s the latest of an expanding array of tools to battle heart problems. Already, half of all congenital heart defects are discovered prenatally. The traditional physical exam of newborns can catch about 50 percent of the defects that had been undiscovered before birth, but the oximeter screening raises the postnatal detection rate to 80 percent.
That further reduces the risk of newborns being sent home with undetected critical problems, which is important because of the dire problems that can ensue.
“They can come in (to the hospital) near death, or they could die at home,” Ballweg said.
For families living in rural areas, far from cardiac-care centers such as Le Bonheur, an emergency might lead to a long ambulance or medical-helicopter ride.
“It’s a very scary experience for those families,” Ballweg said.
For the Goughnours (pronounced GOFF-ners), the screening requirement came more than a decade too late. The Memphis couple learned from an autopsy about Grant’s defect ? and about how he might have been saved by surgery had it been discovered soon enough.
“It was really hard to hear that,” Holly Goughnour said.
Since their son’s death, the Goughnours have held fundraising events such as “Grant’s Gala” to support the Children’s Heart Foundation. They also supported the legislation mandating the oximeter-screening.
“It’s easy, it’s low-cost,” Goughnour said of the testing. “I just think people need to be aware (of the risk of defects). It can happen to anybody.”
With the screening, parents can learn about their babies’ defects before it’s too late.
“We found out in an autopsy,” Goughnour says. “No family should ever have to find out that way.”