Health & Fitness

Advocates push to make heart defect test mandatory for Kansas newborns

Cassandra Foster tended to her daughters Sophia, left, and Isabella the family’s home in Olathe. A simple screening test detected a heart defect in Sophia. The problem was corrected. The same test showed no problem with Isabella.
Cassandra Foster tended to her daughters Sophia, left, and Isabella the family’s home in Olathe. A simple screening test detected a heart defect in Sophia. The problem was corrected. The same test showed no problem with Isabella. Kansas City Star

Cassandra Foster of Olathe knows how a simple screening test – not required in Kansas – can save a newborn baby’s life.

That screening, called a pulse oximetry test, found the oxygen level in Foster’s first child, Sophia, was dangerously low. It was the first step to discovering that Sophia had numerous critical heart defects that would put her in surgery.

“If they did not do that pulse test, she could have died,” said Foster, 27.

Sophia is 13 months old now and healthy, and her mother wants to see to it that every newborn in Kansas gets the same test Sophia received.

So does the Midwest affiliate of the American Heart Association – and Kansas health officials.

But the heart association says Kansas isn’t moving nearly as fast as it should to make sure every baby gets a pulse oximetry test. It’s challenging the state to immediately make the screening of newborns mandatory, as more than 30 other states, including Missouri, already have.

The Kansas Department of Health and Environment did initiate a quality improvement project in November that’s working with the many mostly rural hospitals and birthing centers in the state that don’t yet routinely do the test.

“We are confident we can get 100 percent (of babies) screened by the end of the year,” said Rachel Berroth, director of KDHE’s bureau of family health.

Not good enough, the heart association says.

“Every day we don’t do this puts Kansas children at risk,” said Kevin Walker, the association’s regional vice president for advocacy. “We should tell every hospital now to do it.”

More than 7,200 babies are born every year in the U.S. with critical congenital heart defects that usually require surgery or other interventions early in life. In some newborns, these heart problems show up quickly; their skin may turn blue from lack of oxygen. But in many others, the defects may not show up until days or weeks later when surgery is less effective and the damage may be irreparable.

“We probably see one baby a month who comes to us late, their diagnosis is late,” said Children’s Mercy Hospital neonatologist Steve Olsen. “Their oxygen levels are so low, it weakens their heart and it can translate into brain and organ problems.”

Pulse oximetry tests use light sensors attached to a baby’s hands or feet to measure blood oxygen levels. They are the standard screening tool for these heart defects. The tests cost less than $15 and take about 10 minutes. The Department of Health and Human Services added critical heart defects to its list of recommended routine screenings in 2011.

Olsen said Kansas City-area hospitals have been screening newborns routinely for several years. “But it’s a known concern that some rural hospitals don’t have the equipment, or if the baby fails the test, they aren’t sure what to do.”

Children’s Mercy recently opened a hot line for outlying hospitals to call to discuss test results with its experts. Babies in trouble can be transported to Children’s Mercy.

A KDHE survey of hospitals and birthing centers last fall found that about 78 percent of newborns in Kansas were receiving pulse oximetry screenings. But at that time, only 30 percent of these facilities, mostly larger hospitals in urban areas, were doing the tests.

KDHE’s quality improvement project is using persuasion, along with education and training, to get rural facilities and midwives to do the screenings.

“We are approaching this as a critical screening that should begin at birth,” said Berroth of KDHE.

Berroth sees signs that the project already is heightening awareness. Preliminary data from a second survey last month found 88 percent of the facilities that responded were either already screening infants or making plans. “It’s really encouraging,” she said.

KDHE hasn’t determined that it has the authority to mandate the screening, Berroth said. But she doesn’t see it as necessary.

“All this can be implemented without making it a requirement,” she said. “We feel making it voluntary is a more successful approach.”

Walker of the heart association isn’t so sure.

“My concern is the (KDHE) quality improvement project will not guarantee that every hospital will do this testing,” he said. “While we try to get hospitals on board, there are babies being born every day. It is my opinion the department has the authority to add the test now if it wanted it. It’s easy, it’s cheap. What’s the holdup?”