No One Knows: Birth defects go untracked – even unnoticed – in most states

The news of a cluster of birth defects in Eastern Washington has all the makings of a true medical horror story: children being born with missing parts of their brain and government agencies withholding information from scared parents.

But there’s another story here. It’s the story of a hodge-podge system of birth defect tracking in the United States, a country where most babies are born in states that don’t regularly track birth defects.

JoNel Aleccia at NBC News reported last month that a “mysterious cluster of severe birth defects in rural Washington state is confounding health experts, who say they can find no cause, even as reports of new cases continue to climb.” She wrote:

Federal and state officials won’t say how many women in a three-county area near Yakima, Wash., have had babies with anencephaly, a heart-breaking condition in which they’re born missing parts of the brain or skull. And they admit they haven't interviewed any of the women in question, or told the mothers there's a potentially widespread problem. But as of January 2013, officials with the Washington state health department and the Centers for Disease Control and Prevention had counted nearly two dozen cases in three years, a rate four times the national average.

They won’t say because they can’t say. Washington is one of 35 states in the country that does not have an active birth defect tracking system that requires health care providers to report anomalies. Aleccia’s story raises some very important questions, one of which is: do we expect federal, state, or local governments to pay attention to things like birth defects? So far, the demand for this has been apparently low enough that it’s simply not getting done.

There are just 14 states, one territory, and one city -- Colorado, Florida, Hawaii, Illinois, Iowa, Louisiana, Massachusetts, New Hampshire, New Jersey, New York, North Carolina, Ohio, Oklahoma, Texas, Puerto Rico, and Atlanta – that are committed to actively gathering data on all children born with birth defects for the purposes of tracking and prevention. (This does not mean that they always gather, analyze, or report the data in a timely fashion, but that’s for another post.)

Read part 2: Lack of birth defect tracking leaves parents and agencies with few choices

In addition, there are a few states that actively track at least some of the birth defects in their state, including Arkansas, Arizona, California, Kentucky, Minnesota, Rhode Island, and Utah.

What does Washington do? Like a lot of states, it makes reporting voluntary, and this means that a lot of places don’t report their birth defects. So many that the Washington State Department of Health, which oversees the state’s tracking, says this:

The use of a passive surveillance system, the lack of data from the non-reporting facilities and the non-reporting of fetal deaths from most facilities may result in prevalence estimates which do not accurately reflect the magnitude of birth defects in Washington State.

So what does that mean in terms of how many babies are being regularly examined to generate data for national level estimates? Consider that there were 3.9 million births in the United States in 2010 (3,999,396), and 1.8 million of those babies were born in the states and one city that have active tracking systems (1,806,254). That means that 45% of all babies were comprehensively examined for a range of birth defects and any problems were logged and tracked. The other 55% of the babies may have been examined for birth defects. We can’t be sure. Nor can we be sure that the problems were logged anywhere. We can be sure the birth defects from those states are not being tracked in any central database.

This is why when you see birth defect statistics, like the ones Aleccia used in her story, you are seeing estimates for the entire country based on a less than half of the states and never more than half of the population in the country. As we know from so many areas of health, there are huge differences between states – and between counties within those states – on the rates of health conditions.

Most numbers you see in health care reports are estimates based on a subset of tracking systems or household surveys or phone polls. Even the U.S. Census, with its ambitious effort to count every person from coast to coast, is unable to literally count every head.

But because these are estimates, they all come with what statisticians call a range of uncertainty, which means the estimate could really be as low as X but as high as F.

There’s also a lag time issue. The latest numbers on birth defects from the CDC were reported in January 2011. And they were from a three year period. Not for 2010. Not for 2009. Not even for 2007. In 2011, the numbers were for 2004 to 2006. A lot can change in eight years. And it is highly likely that the rates of birth defects in 2014 are different than they were in 2006 – possibly higher, possibly lower.

I’m always interested in how people start referring to something as a “cluster” in the first place. Anyone who has worked in a newsroom has heard about the “rule of three.” Three of anything often is enough of a trend to make a story. And that’s exactly what started the ball rolling here. It was two cases with the possibility of a third. Aleccia wrote:

Health officials originally were alerted to the problem by a nurse, Sara Barron, 58, who was in charge of infection control and quality assurance at Prosser Memorial Hospital, a 25-bed medical center in the farm town set on the Yakima River. A 30-year nursing veteran, she’d seen perhaps one or two devastating cases of anencephaly in her wide-ranging career. “And now I was sitting at Prosser, with 30 deliveries a month and there’s two cases in a six-month period,” Barron said. “Then, I was talking to another doctor about it and she has a third one coming. My teeth dropped. It was like, ‘Oh my God.’”

Is “Oh my God” the right reaction?

It’s certainly understandable, especially given the emotions that parents have around even a relatively uncomplicated birth with no discernible birth defects. But with three cases – or even the 28 that ultimately were discovered – the leap to “Oh my God” happens in large part because there is no true trend line for comparison. Would investigators have found the same number of birth defects of a similar type a year ago if Barron had happened to be the nurse paying attention at a different hospital? If we are relying on medical staff to spot trends and sound alarms, we are putting too much of the burden on them.

They should rightly be focused on making sure that patients are treated and leave the hospital. Let them log birth anomalies, infections, and all kind of outcomes good and bad. If systems were in place in all 50 states to actively track birth defects. And if those systems were reporting that information to the CDC – and the public – in a timely fashion, we wouldn’t be relying on the Sara Barrons of the world to spot something odd that might be a horrible outbreak but also might be nothing more than random.

But the question remains: what should parents be told? Read more in part two.

Image by Meagan via Flickr