Editor’s note: Montana’s newborn screening program depends on speed to save babies from a plethora of deadly disorders at birth. But the Montana Department of Public Health and Human Services fought for 10 months to keep hospitals’ performance records hidden from public view, before finally agreeing to release the data with hospital names.
The results are not good, highlighting the importance of transparency and accountability to ensure an effective newborn screening program for Montana families.
Newborn screening programs saves lives when healthcare facilities act swiftly and follow protocol, protecting newborn children from dozens of life-threatening conditions, and reassuring a family’s first hope that their baby is healthy. But the process can become deadly when protocol is not followed and standards for efficiency fall by the wayside.
Today we are publishing a package of five stories on newborn screening programs in Montana, produced by the Montana Center for Investigative Reporting. Here is the first story:
Noah Wilkerson seemed to be a happy, healthy baby when he was born in June 2009 at a Colorado Springs hospital. The following morning his newborn screening blood sample was collected. But it would two more days before his sample was picked up by a courier service and delivered to the state lab, which did not process samples on weekends.
The delay would prove to be deadly.
At home the following Tuesday, Noah was carefully tucked into his mother’s chest inside a sling while his parents ate dinner. Afterward, his mother Sarah Wilkerson lifted Noah from the sling to get him ready for feeding time. That’s when they noticed he was blue and unconscious.
At the hospital doctors did everything they could to try to get little Noah’s heart started again. They inserted breathing tubes and IV lines, gave him adrenaline shots and performed CPR. But after almost an hour, nothing was working. His little body was still lifeless.
Then, at 9:47 p.m., Noah was pronounced dead.
The results from his newborn screening blood test came back one day later. Noah had MCAD deficiency; an easily treatable disorder that lowers blood sugar to dangerous levels and can kill.
Nearby, another infant born just three days before with the same disorder as Noah at a Colorado hospital an hour’s drive away, was alive and well, a Milwaukee Journal Sentinel investigation detailed in 2013.
Newborn screening around the country, meant to quickly detect and treat conditions like Noah’s, have been around for more than 50 years. But thousands of delays, which have become commonplace, are undermining the system’s effectiveness, putting babies at great risk of death, brain damage and a lifetime of costly medical care.
And Montana is no exception.
In an era of advanced technology when overnight delivery is routine, it is inexcusable that so many hospitals in Montana still fail to get life-saving samples to labs within the three-day time frame recommended by the American College of Medical Genetics and Genomics. And it is inexcusable that Montana’s state public health officials continue to let them get away with it.
Based on the ACMG’s recommendation of three days, which the Montana Department of Public Health and Human Services has recently adopted, several healthcare facilities in Montana are still getting less than half of all newborn blood samples to the labs on time, a Montana Center for Investigative Reporting analysis of nearly 50,000 newborn screening records found.
MTCIR used four or more days as a metric for lateness, which is widely considered unacceptable by lab directors around the country. Charles Brokopp, Wisconsin’s state lab director, which DPHHS has a contract with to conduct the majority of its newborn screening tests, said “it’s best for samples to arrive at the lab within 48 hours of collection.”
The data MTCIR analyzed covers the past four calendar years, from 2011 to 2014. In the data, more than 30 hospitals, birthing facilities and individuals offering midwife services are named, provided each had at least 20 births in a given year under its care. Any healthcare facility or individual offering midwife services that handled fewer than 20 births per year were not named, due to federal and state healthcare privacy laws, namely HIPAA.
Samples late to Montana lab
After 10 months of fighting to keep the performance of Montana hospitals hidden from the public, DPHHS finally agreed to release all the Montana data to MTCIR with the metric of days elapsed between sample collection and sample arrival at the Montana Public Health Laboratory in Helena.
Guidelines from the ACMG also recommend that specimens should arrive in laboratories with 95 percent efficiency, within the three-day window. But an in-depth analysis of the data shows in that four-year span, only one in 33 hospitals delivered its newborn blood samples within three days, 95 percent of the time. That hospital was Pondera Medical Center in Conrad, which delivered 96 percent of all samples to the lab within three days. Pondera, however, contributed only 74 newborn blood samples to the entire dataset; the facility is quite small compared to hospitals located in bigger cities in the state.
Every other hospital named in the data delivered samples on-time to the lab any where from 93 percent of the time down to as little 39 percent in the case of Northeast Montana Health Services in Wolf Point, which had the worst performance record in delivering samples to Helena in a timely manner. The vast majority of its samples failed to meet the minimum recommended efficiency.
At St. Peter’s Hospital in Helena, for example, an average of 667 out of 2,975 samples — or 23 percent—arrived late to the labs for testing. The hospital is just one mile away from the in-state lab.
Approximately one in every 800 babies is born with one of these potentially severe or deadly conditions—which can be treated and managed successfully—if the screening process is peformed quickly and efficiently. These babies often appear completely healthy at birth but can become violently ill within days.
Some of the hospitals in more populated areas that had poor overall performances are: Holy Rosary Healthcare in Miles City, with 50 percent of samples arriving late; Kalispell Regional Hospital in Kalispell, with 40 percent of samples arriving late; St. Vincent Healthcare and Billings Clinic in Billings, with 39 percent and 38 percent of samples arriving late; Bozeman Deaconess Hospital in Bozeman, with 27 percent of samples arriving late; and St. Peter’s Hospital in Helena, with 23 percent of samples arriving late, even though it’s located just one mile from the dropoff location at the state lab.
Samples late to Wisconsin lab
Montana’s newborn screening program requires newborns to be tested for 29 different metabolic, blood and heart disorders that don’t often exhibit symptoms until a few days or sometimes months after birth.
The Montana Public Health Laboratory in Helena, where all samples are sent, is capable of performing only six of the newborn screening tests. As a result, portions of all the samples are forwarded on to Wisconsin’s state lab where the remaining 23 tests are performed.
Even though DPHHS claims it sends the samples it receives in Helena to Wisconsin the same day they’re received via overnight delivery, Montana is at a disadvantage compared to other states that can conduct all of the required testing on its own because forwarding the samples out of state adds an extra day to the length of time it takes to reach the lab.
Although DPHHS did not release the Wisconsin data to MTCIR, we gave state public health officials the benefit of the doubt in calculating timeliness efficiency for samples forwarded to Wisconsin’s lab, by simply adding the one extra day to the data for samples arriving in Helena.
For example, a list of samples from one of the named hospitals contains 620 newborn blood samples and how many days it took each sample to arrive at the state lab in Helena after the date the sample was collected. So to calculate how long it took for each sample to reach the Wisconsin lab, we added one day to every sample. Samples that took two days to reach Helena became three days to reach Wisconsin, three days became four days and so on.
With a perfect performance record day in and day out, 100 percent of samples would make it to the Wisconsin lab the very next day after arriving in Helena. But of course, things happen and samples are late for a variety of reasons: New hospital employees are not trained and do not know the protocol to send samples within 24 hours of collection; sometimes samples can be held up so they can be sent in groups, instead of sending them right away; some facilities send samples through the mail, which can be delayed or lost for a number of reasons; sometimes samples can even get lost at a hospital before they are mailed or picked-up by courier; or a driver with a courier service could also experience severe weather or road closures. As a result, MTCIR realizes taking DPHHS at its word will certainly yield optimistic numbers, with less samples showing up late than what is reality.
To read four related stories, scroll down the Last Best News home page or go directly to these stories:
Part 3: State lab courier system explained.
If you’re a parent with a child who has had a particularly good, or bad experience, with newborn screening in Montana, we would love to hear your story. Please fill out our contact form, or send us an email to: email@example.com.
This story was written with support from the Fund for Investigative Journalism.