Newborn bloodspot screening is a successful public health tool that improves outcomes for children born with congenital health threats and has saved thousands of lives.
Most disorders are not apparent at birth or in the first few days of life. But without early treatment, they can rapidly progress, leading to death or life-long disability. Therefore, the faster screening results are returned, the sooner parents and health care providers can begin appropriate care.
With Alaska’s sheer size, getting quick results can be challenging. Until recently, less than 0.5 percent of our babies had complete lab results within seven days of birth, which is the national standard.
Eighteen months ago, the Alaska Department of Health and Social Services began a quality improvement project with funding from the Health Resources and Services Administration (HRSA) to improve newborn bloodspot screening.
We are pleased to announce that in July, 93 percent of Alaska’s babies had complete newborn screening results within seven days. Alaska has become one of the top performing bloodspot screening programs in the country.
Even better, nearly half of those results are available by the fifth day of life. Division of Public Health Perinatal Nurse Consultant Sabra Anckner, the program manager, says she expects continued improvement. “Babies born in Alaska deserve to have as good outcomes as babies born anywhere else,” says Anckner. Apparently, worst to almost first is not good enough for Anckner; her goal is to have most results back by day four or possibly even earlier.
All babies in Alaska are screened unless families opt out. Fortunately, participation rates are nearly 100 percent. Of roughly 10,500 children born each year in Alaska, screening detects life-threatening but treatable disorders in about 20 infants.
How did all this success happen? Much credit is due to Anckner, her coworkers, and healthcare providers across the state. Together, Anckner’s team showed great results through problem-solving, innovation, cooperation with partners and persistence.
Anckner remembers being inspired by a video at a conference that told the stories of families in other states affected by newborn screening. In one case, lab results detecting a treatable disorder came back the day after a baby had died. Had the turnaround time been faster, that baby could have been saved.
“It motivated me to make these improvements,” Anckner said. “I didn’t want to be the one to make that phone call, just a day too late.”
Fortunately, around the same time, Alaska became one of 28 states participating in the NewSTEPs program through HRSA aimed at improving newborn screening.
Before, Anckner said it was up to each health care facility to mail or ship samples however they chose to an Outside lab. With the NewSTEPS funding, Anckner was able to build a statewide shipping system to collect samples daily by courier from Anchorage and surrounding areas and by expedited air cargo from rural areas. Those samples are flown in a batch on the next available flight to the lab. DHSS is also partnering with a laboratory that operates seven days a week, further expediting processing.
Today, results are complete in the same amount of time it used to take to just get the samples to the lab. Seven days a week, partners at the lab and Division of Public Health are calling out results to providers, helping ensure that Alaska’s babies have a great start in life.
These improvements have already changed and saved young lives. Now that’s something to celebrate.
Jay C. Butler, MD is Alaska’s Chief Medical Officer. More information on the Alaska Newborn Screening Program can be found at http://dhss.alaska.gov/dph/wcfh/Pages/bloodspot/default.aspx