DES MOINES, Iowa – A simple test measuring the oxygen level in a newborn’s blood helped save Gracelynn Marie Holschlag’s life shortly after she was born May 26.
As part of a screening program that began two weeks earlier at Waverly Health Center, a nurse wrapped a small adhesive sensor around the baby’s right hand and left foot. The reading in her foot showed an oxygen level of 83 percent, below the normal level of above 95 percent, so the newborn was referred to a pediatric cardiologist.
“To our naked eye, she looked normal,” said Jodi Holschlag, Gracelynn’s grandmother, who also administers the pulse oximetry tests as a labor and delivery nurse at the health center.
The cardiologist described Gracelynn’s condition as “a storm waiting to happen,” Holschlag said, and sent her to the University of Iowa Children’s Hospital in Iowa City for surgery. An echocardiogram at three weeks showed a narrowing of the newborn’s aorta.
“If she would have crashed at home, that would have been very scary and possibly deadly,” Holschlag said.
U.S. Health and Human Services Secretary Kathleen Sebelius recommended in September 2011 that newborns receive pulse oximetry screening tests after studies showed it could improve early detection of critical congenital heart defects. Nine states now have laws mandating the test on newborns. Twenty-one others have passed legislation in one house of their state legislatures.
In Iowa, 30 percent of hospitals offer the screening, according to the American Heart Association.
Mariannette Miller-Meeks, director of the Iowa Department of Public Health, said adding another mandatory newborn screening requires legislation or an administrative rule change through the state board of health. But the decision to administer the test, she said, should be “in the purview of the medical community, rather than the state board of health.”
The Iowa Department of Public Health has already convened an expert committee that developed guidelines based on those issued by the American Academy of Pediatrics, sharing them with Iowa birthing hospitals. Iowa’s Neonatal Metabolic Screening Program identifies more than 50 congenital conditions using blood tests.
The cost of the screening is about $4, which covers the replacements for the probes used, and is covered under the Affordable Care Act.
Stacy Frelund, lobbyist for the American Heart Association, said making the test mandatory in Iowa will be a top legislative priority for 2013 in Iowa.
“If something goes wrong, depending on where you’re at, time is critical,” Frelund said.
Sara Lockie, a mother whose son’s critical congenital heart defect was spotted prenatally, has joined forces with the AMA to push the issue on the state level.
Lockie’s 20-week ultrasound showed her son was missing his tricuspid valve, a condition called tricuspid atresia-hypoplastic right heart syndrome, in which the structures on that side of the heart are undeveloped. She and her husband, Kyle, later learned their child had an entire list of heart defects, including transposition of the great arteries and an interrupted aortic arch. Simply put, their son has half a heart.
The Lockies consider themselves lucky to have scheduled Jonathan’s delivery on March 16, 2011, with medical backup at Mercy Medical Center. The newborn underwent open heart surgery six days later.
“It was advantageous. At the time I thought it was curse, but it was actually a huge blessing to have that prenatal diagnosis,” she said.
Two days after his first surgery, Jonathan’s heart stopped. He was hooked up to a heart-lung machine for four days and recovered in the pediatric intensive care unit for two months. The surgeries that saved his life resulted in a significant brain injury, Lockie said.
Lockie said she began to push for the screening after her research found many heart defects are not caught prenatally. The ultrasound at 20 weeks alerted doctors to her son’s problem. She said other families may not be as lucky. According to the Centers for Disease Control and Prevention, about 7,200 children are born with critical congenital heart defects each year. An estimated 300 of those are discharged without the defects being detected.
“Knowing what Jonathan’s been through, these kiddos need every advantage, every chance, all the help they can get for all they have to go through,” she said. “We just want to do what we can for other kids.”
Compared with the extensive medical care Jonathan will need throughout his life, the cost of screening is minimal, Lockie said. By six months, Jonathan had already racked up $1 million in medical bills.
Because he was too fragile for day care, Lockie quit her job as a middle school history teacher to care for Jonathan and his older brother, James, 4.
A nurse assists during the week, and Jonathan receives therapy through ChildServe at the family’s home in Ankeny. Jonathan needs a wheelchair and struggles to use his muscles, hold his head up and interact with the world the way he wants. He has a feeding tube, is on a dozen medications and needs one more surgery.
“The equipment is in the hospitals. It’s less than five minutes, less than $4, less invasive than a Band-Aid. It just makes sense,” Lockie said.
Dr. J. Michael Metts, medical director for the well-baby unit of Mercy Women and Infants’ Center, said the screening is “just one extra test that really adds no negative.”
“We are very good at diagnosing critical congenital heart disease through all our other means,” he said. “It doesn’t cause any harm, cost for the patient or facility. It’s one more safety measure to make sure the baby’s health at the time of discharge,” Metts said, cautioning that the test won’t catch every case.
A positive screen may also show a problem with the lungs or an infection. In one recent case at Mercy, low oxygen numbers in a newborn who appeared to be doing well led physicians to look deeper in the cause, which did not end up being a heart defect.
“We would have likely picked that up within a few hours, but it gave us a couple hours head start,” Metts said.
Pulse oximetry helps detect problems before symptoms appear, explained Dr. Eric Haugen, medical director of nurseries at Iowa Health-Des Moines, which implemented screening Sept. 1. Left untreated, critical congenital heart defects can be devastating and typically require surgery to correct, sometimes within the first few days of life.
“Oftentimes, the symptoms of those conditions are not evident at birth. With infants going home sometimes as early as 24 hours after they’re born, they may not starting showing those signs of turning blue, having a heart murmur that can be heard or having breathing issues before they leave,” he said.
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