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 on 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.
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.
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."
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.
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.
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.
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."
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.
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.
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.
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.
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