DES MOINES, Iowa -- A simple test measuring the oxygen level in anewborn's blood helped save Gracelynn Marie Holschlag's life shortlyafter she was born on May 26.
As part of a screening program thatbegan two weeks earlier at Waverly Health Center, a nurse wrapped asmall adhesive sensor around the baby's right hand and left foot. Thereading in her foot showed an oxygen level of 83 percent, below thenormal level of above 95 percent, so the newborn was referred to apediatric cardiologist .
"To our naked eye, she looked normal,"said Jodi Holschlag, Gracelynn's grandmother, who also administers thepulse oximetry tests as a labor and delivery nurse at the health center.
Thecardiologist described Gracelynn's condition as "a storm waiting tohappen," Holschlag said, and sent her to the University of IowaChildren's Hospital in Iowa City for surgery. An echocardiogram at threeweeks 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 Sebeliusrecommended in September 2011 that newborns receive pulse oximetryscreening tests after studies showed it could improve early detectionof critical congenital heart defects. Nine states now have lawsmandating the test on newborns. Twenty-one others have passedlegislation in one house of their state legislatures.
In Iowa, 30 percent of hospitals offer the screening, according to the American Heart Association.
MariannetteMiller-Meeks, director of the Iowa Department of Public Health, saidadding another mandatory newborn screening requires legislation or anadministrative rule change through the state board of health. But thedecision to administer the test, she said, should be "in the purview ofthe medical community, rather than the state board of health."
TheIowa Department of Public Health has already convened an expertcommittee that developed guidelines based on those issued by theAmerican Academy of Pediatrics, sharing them with Iowa birthinghospitals. Iowa's Neonatal Metabolic Screening Program identifies morethan 50 congenital conditions using blood tests.
The cost of thescreening is about $4, which covers the replacements for the probesused, and is covered under the Affordable Care Act.
Stacy Frelund,lobbyist for the American Heart Association, said making the testmandatory 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.
SaraLockie, a mother whose son's critical congenital heart defect wasspotted prenatally, has joined forces with the AMA to push the issue onthe state level.
Lockie's 20-week ultrasound showed her son wasmissing his tricuspid valve, a condition called tricuspidatresia-hypoplastic right heart syndrome, in which the structures onthat side of the heart are undeveloped. She and her husband, Kyle, laterlearned their child had an entire list of heart defects, includingtransposition of the great arteries and an interrupted aortic arch.Simply put, their son has half a heart.
The Lockies considerthemselves lucky to have scheduled Jonathan's delivery on March 16,2011, with medical backup at Mercy Medical Center. The newborn underwentopen heart surgery six days later.
"It was advantageous. At thetime I thought it was curse, but it was actually a huge blessing to havethat prenatal diagnosis," she said.
Two days after his firstsurgery, Jonathan's heart stopped. He was hooked up to a heart-lungmachine for four days and recovered in the pediatric intensive care unitfor two months. The surgeries that saved his life resulted in asignificant brain injury, Lockie said.
Lockie said she began topush for the screening after her research found many heart defects arenot caught prenatally. The ultrasound at 20 weeks alerted doctors to herson's problem. She said other families may not be as lucky. Accordingto the Centers for Disease Control and Prevention, about 7,200 childrenare born with critical congenital heart defects each year. An estimated300 of those are discharged without the defects being detected.
"Knowingwhat Jonathan's been through, these kiddos need every advantage, everychance, all the help they can get for all they have to go through," shesaid. "We just want to do what we can for other kids."
Comparedwith the extensive medical care Jonathan will need throughout his life,the cost of screening is minimal, Lockie said. By six months, Jonathanhad already racked up $1 million in medical bills.
Because he wastoo fragile for day care, Lockie quit her job as a middle school historyteacher to care for Jonathan and his older brother, James, 4.
Anurse assists during the week, and Jonathan receives therapy throughChildServe at the family's home in Ankeny. Jonathan needs a wheelchairand struggles to use his muscles, hold his head up and interact with theworld the way he wants. He has a feeding tube, is on a dozenmedications and needs one more surgery.
"The equipment is in thehospitals. It's less than five minutes, less than $4, less invasive thana Band-Aid. It just makes sense," Lockie said.
Dr. J. MichaelMetts, medical director for the well-baby unit of Mercy Women andInfants' Center, said the screening is "just one extra test that reallyadds no negative."
"We are very good at diagnosing criticalcongenital heart disease through all our other means," he said. "Itdoesn't cause any harm, cost for the patient or facility. It's one moresafety measure to make sure the baby's health at the time of discharge,"Metts said, cautioning that the test won't catch every case.
Apositive screen may also show a problem with the lungs or an infection.In one recent case at Mercy, low oxygen numbers in a newborn whoappeared 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.
Pulseoximetry 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 congenitalheart defects can be devastating and typically require surgery tocorrect, sometimes within the first few days of life.
"Oftentimes,the symptoms of those conditions are not evident at birth. With infantsgoing home sometimes as early as 24 hours after they're born, they maynot starting showing those signs of turning blue, having a heart murmurthat can be heard or having breathing issues before they leave," hesaid.