Results of NJ Law Requiring Newborn Screening Resonate Nationwide

Andrew Kitchenman | July 17, 2013 | Health Care
Other states look to duplicate fast implementation, early success in detecting heart defects

Assemblyman Jason O’Donnell (D-Hudson).
Three New Jersey babies with congenital heart defects had their conditions detected early thanks to newborn screening required under a law that has put the state in the forefront of a national movement to mandate the test.

State officials have been receiving calls from across the country about the successful implementation of the 2011 law, which is the subject of a study published Monday in the medical journal Pediatrics.

The law mandates a form of screening called pulse oximetry, in which a device placed on an infant’s foot tests the baby’s blood. A negative result can show that there is an underlying health problem, such as a congenital heart defect. Early screening allows for life-saving surgeries to repair infants’ damaged hearts.

The study found that in addition to the three babies found to have congenital heart defects, another 17 of the roughly 73,000 infants screened had other serious health problems detected as a result of the testing . The study covered the first nine months of screening, from August 31, 2011, to May 31, 2012.

Hospitals in New Jersey managed to screen more than 99 percent of eligible newborns even though the mandate kicked in only three months after the law went into effect.

“During those 90 days, we worked quickly to convene a working group of experts” and to develop the steps to be used, said Dr. Lorraine Garg, a study author and the medical director of newborn screening and genetic services for the state Department of Health.

As the first state to implement statewide screening, New Jersey is drawing interest from other states. Garg said she has spoken to health officials from more than a dozen states interested in how New Jersey implemented the screening.

The state is now in the process of implementing a new screening designed to detect a series of genetic disorders.

Law sponsor Assemblyman Jason O’Donnell (D-Hudson) became interested in early testing after his son was diagnosed with a heart murmur after he was born in 2006. A neonatal unit doctor recommended that the baby be examined by a pediatric heart doctor, who found within minutes that surgery was required.

“It was just by chance that the doctor wanted to go above and beyond” what was required and called for the test, O’Donnell said.

That experience stayed with him after he joined the Legislature in 2010 and he became aware of an effort at the national level to introduce newborn pulse oximetry screening. O’Donnell noted that every hospital already had the necessary equipment, which is used for many purposes.

“The cost was minimal. The time is minimal…It’s a minute,” O’Donnell said.

He said that the study results are gratifying.

“The fact that it saved (at least) one child’s life, it’s something that all of our legislation should have in mind, what net benefit it would have to the community. – as testing gets better, we should find even more ways” to test, said O’Donnell, adding that he would like to see New Jersey lead the country in reducing infant mortality.

O’Donnell noted that with a cost of roughly $14, it’s a worthwhile investment. He noted that while screening occasionally results in a false positive result, those results only result in more testing. He noted that his own son is now 7 and has a strong heart.

One of the people who made O’Donnell aware of the benefits of the screening was Annamarie Saarinen, a Minnesota-based lobbyist who has advocated for the screening nationally after her daughter Eve, now 4, was born with a heart defect.

“I think New Jersey has been a great example of successful” implementation of the screening, Saarinen said.

Saarinen said she has stayed in touch with Garg and other state officials.

“It’s quite a monumental task and I still point to New Jersey as the gold standard,” Saarinen said.

In talking with officials in other states, “We hear things like, ‘We need two years to implement,’ and I say, ‘Oh really, guess what? New Jersey needed three months to implement and they did a good job,’” she said.

A month after New Jersey enacted its law, U.S. Secretary of Health and Human Services Kathleen Sebelius urged other states to implement the screening. Thirty-five states have either implemented the screening or are considering it. Saarinen said nearly 40 percent of newborns are being screened nationally, saving many lives each year.

“Every day that we hear about a baby that’s been detected is a good day,” Saarinen said.

State officials will be highlighting the benefits of newborn screening at a series of events later this month, when a travelling national exhibit marking the 50th anniversary of newborn screening comes to New Jersey. State officials said that 6,400 babies in New Jersey have tested positive for genetic conditions out of nearly 2.4 million infants screened in the last 20 years. Many of those children benefited from early treatment.