The $13 Test That Saved My Baby’s Life. Why Isn’t it Required For Every Newborn?

On July
10, my wife gave birth to a seemingly healthy baby boy with slate-blue eyes and
peach-fuzz hair. The pregnancy was without complications. The delivery itself
lasted all of 12 minutes. After a couple of days at Greenwich Hospital in
Connecticut, we were packing up when a pediatric cardiologist came into the
room.

We would not be going home, she told us. Our son had a narrowing
of the aorta and would have to be transferred to the neonatal intensive care
unit at NewYork-Presbyterian Hospital at Columbia, where he would need heart
surgery.

It turned out that our son was among the first in Connecticut
whose lives may have been saved by a new state law that requires all newborns
to be screened for congenital heart defects.

It was just by chance that we were in Connecticut to begin with.
We live in New York, where such tests will not be required until next year. But
our doctors were affiliated with a hospital just over the border, where the law
took effect Jan. 1.

As we later learned, congenital heart problems are the most
common type of birth defect in the United States. The Centers for Disease
Control and Prevention estimate that about one in 555 newborns have a critical
congenital heart defect that usually requires surgery in the first year of
life.

Many cases are caught in prenatal ultrasounds or routine newborn
exams. But as many as 1,500 babies leave American hospitals each year with undetected
critical congenital heart defects, the C.D.C. has
estimated.

Typically, these babies turn blue and struggle to breathe within
the first few weeks of life. They are taken to hospitals, often in poor
condition, making it harder to operate on them. By then, they may have suffered
significant damage to the heart or brain. Researchers estimate that dozens of
babies die each year because of undiagnosed heart problems.

The new screening is recommended by the United
States Department of Health and Human Services, the American Heart Association
and the American Academy of Pediatrics. Yet more than a dozen states
— including populous ones like Massachusetts, Pennsylvania, Florida,
Georgia, Wisconsin and Washington — do not yet require it.

The patchy adoption of the heart screening, known as the pulse
oximetry test, highlights larger questions about public health and why good
ideas in medicine take so long to spread and when we should legislate clinical
practice.

Newborns are already screened for hearing loss and dozens of
disorders using blood drawn from the heel. The heart test is even less
invasive: light sensors attached to the hand and foot measure oxygen levels in
the baby’s blood. This can cost as little as 52 cents per child.

Our son’s heart defect was a coarctation of the aorta, a
narrowing of the body’s largest artery. This made it difficult for blood to
reach the lower part of his body, which meant that the left side of his heart
had to pump harder.

In the hospital, though, he appeared completely healthy and
normal because of an extra vessel that newborns have to help blood flow in
utero. But that vessel closes shortly after birth, sometimes revealing hidden
heart problems only after parents bring their babies home.

Depending on the heart defect, the onset of symptoms can be
sudden.

This is what happened to Samantha Lyn Stone, who was born in
Suffern, N.Y., in 2002. A photograph taken the day before she
died shows a wide-eyed baby girl lying next to a stuffed giraffe. The
next morning, her mother, Patti, told me, she was wiping Samantha’s face when
she heard a gurgle from the baby’s chest.

Before her eyes, Samantha was turning blue. Blood began to spill
from her mouth. Ms. Stone dialed 911, and minutes later, a doctor who heard the
call over a radio was there performing CPR. Samantha
went to one hospital and was flown to another.

But the damage was irreparable. Samantha had gone 45 minutes
without oxygen: She lapsed into a coma and died six days later.

It wasn’t until several years later that Ms. Stone learned about
the pulse oximetry test. “This could have saved my daughter,” she told me.
“There is no parent that should ever have to go through what I went through.”

Pulse oximetry is not a costly, exotic procedure. Most hospitals
already have oximeters and use them to monitor infants who suffer
complications. You can buy one at Walmart for $29.88.

A recent study in New Jersey, the first state to implement the
screening, estimated that the test cost $13.50 in equipment costs and nursing
time. If hospitals use reusable sensors similar to those found on
blood-pressure cuffs, the test could cost roughly fifty cents.

As medical technology advances, few screenings will be so cheap
or simple. Recent years have seen controversy over prostate cancer and mammography
screenings. Medical ethicists have to weigh the costs of each program and the
agony caused by a false positive against the lives saved.

But with pulse oximetry, the false positive rate is less than
0.2 percent — lower than is seen for screenings newborns already get. The
follow-up test is usually a noninvasive echocardiogram, or an ultrasound of the
heart. A federal advisory committee came down in favor — three
years ago.

“There’s really no question, scientifically, this is a good
idea,” said Darshak Sanghavi, a pediatric cardiologist and a fellow at the
Brookings Institution. “The issue is, how do we change
culture?”

Opposition has taken two forms. One is from doctors who believe
policy makers shouldn’t interfere with how medical professionals do their jobs.
The other is from smaller hospitals, which worry about access to
echocardiograms and the costs of unnecessary transfers.

These concerns can be addressed fairly easily. Nurses in New
Jersey and elsewhere have been able to work the test into their normal
routines. A rural hospital should already have a protocol to transfer a newborn
in serious condition. If Alaska can do it, less remote states can, too.

But this is not simply a rural health care problem.
Cardiologists and neonatologists I’ve spoken with said they knew of hospitals
in New York City, Boston and metropolitan Atlanta that weren’t screening
newborns for heart defects.

“It’s completely the luck of the draw of where you deliver,”
said Annamarie Saarinen, who has pushed for the screening since her daughter
narrowly avoided leaving the hospital with an undetected heart defect.

Fortunately, our son’s condition was also caught and corrected.
The only lasting effects are a three-inch scar on his side and checkups with a
cardiologist. He will live a normal life. He will be able to play sports and
climb things he’s not supposed to.

Shouldn’t every baby have that chance?