CELESTE HEADLEE, HOST:
Next, delays at American hospitals are putting millions of newborns at risk. Imagine this, you've just brought your infant home from the hospital. At first, the baby seems perfectly healthy. Then you notice he or she won't keep down formula, for example, or breaks out into a rash and eventually won't eat. Doctors can't figure out what's going on, and it turns out your baby's blood samples that were taken right after birth hadn't even been sent off to the lab yet. This kind of delay can put a baby at risk for a disability and, in some extreme cases, death. Joining us now with more is Ellen Gabler, who's been reporting on this problem with Milwaukee's Journal Sentinel. Ellen, thanks for joining us.
ELLEN GABLER: Thanks for having me.
HEADLEE: First of all, what exactly are they testing for? I mean, most mothers have been through this - have seen them take the blood samples. What are they trying to find?
GABLER: Nearly every baby that's born in the country is tested for these rare genetic disorders shortly after birth. They're metabolic disorders - genetic disorders, that if they're caught early, they can be treated and the child, in most cases, can go on to live a completely healthy life.
HEADLEE: And when you say they're caught early, would a delay of a few days make a difference?
GABLER: A delay of a few days does make a difference. In fact, a delay of even a couple of hours makes a difference. I analyzed nearly 3 million newborn screening tests...
HEADLEE: Holy cow.
GABLER: ...From throughout the country. There are significant delays at hospitals throughout the country and in many states.
HEADLEE: Give me an example of a disorder that, for example, as you say, a few hours might make a difference.
GABLER: Galactosemia is one of these disorders that can very quickly endanger a newborn's life. Babies that are affected cannot process galactose, which is a sugar in milk. And if you're a little baby, you're eating breast milk or formula, which has galactose. And as they drink the breast milk or formula, these toxins build up in their body, and children who have galactosemia can suffer brain damage within a matter of days.
HEADLEE: You actually - after you analyzed this mountain of data - you tracked down some of the parents to get their stories. What did you hear from them?
GABLER: I heard the same stories over and over again. I spoke with a number of parents, and their child was born - was seemingly, perfectly healthy and then they got sick. They couldn't keep down formula. They were vomiting. They changed color. They were gray. And in most of the case, the doctor said don't worry about it, your baby is fine. But the child just got sicker and sicker. And the problem was this blood test, which has the answer, hadn't been tested yet, so nobody knew.
HEADLEE: Let's talk about what regulations dictate how long a hospital can take to return these blood tests. It would seem to me, for something like you're talking about, in which hours would make a difference, there would be some kind of regulation in place saying this has to be done on site and immediately.
GABLER: Regulations vary widely across the country and throughout the states. And so, in some states, there are regulations that say the blood samples must be sent from the hospital within 24 hours to state labs. These blood tests are usually tested at state labs. In New York, for example, there's a state regulation that says the blood sample has to arrive at the state lab within 48 hours after it was collected. But I found that only 60 percent of samples in New York arrived within that time period that's regulated by state law.
HEADLEE: So what causes these delays? Is it just an incredible number? Are they just overwhelmed?
GABLER: In some cases, hospital staff - they just don't know the protocols that they're supposed to be following. In other cases, you know, there's maybe a delay in the mail room.
HEADLEE: If the regulations vary wildly state to state, how does one address this problem and are lawmakers actually looking at it?
GABLER: There's already been some significant action since our story ran. In fact, before our story even came out. Hospitals throughout the country, in some cases, didn't even know that this was a problem. They said that they hadn't been alerted by their state lab. In Wisconsin, our largest hospital chain didn't have the best record. And as soon as we told them about it, they made all these fixes to make sure that the blood samples get there more quickly. The American Hospital Association sent a quality alert to all of their hospitals. The Association for State Public Health Laboratories also alerted all of their members. So people are starting to be aware of the problem and are starting to make changes.
HEADLEE: If somebody is just getting ready to give birth or deliver in a hospital and you're concerned about this, how do you follow through to make sure that these tests are done and that they're done quickly?
GABLER: Well, parents have to ask questions. And one of the concerning things about this story - I requested data from every single state in the country, but only 26 states would release the data with hospital names. So parents who live in these other 24 states have no idea what the record of their hospital is. And that's pretty concerning because, like you said, if you're going to have a baby, you probably want to know how your hospital stacks up.
HEADLEE: Is there a place you can go? Let's say that you don't know, I mean, can you then go to your own pediatrician and have the blood work done?
GABLER: I guess you could, but the hospital is supposed to - the hospital does this when your child is born. It's a very well-known process. In fact, it's required by law in every single state.
HEADLEE: Yeah, but you just explained to me, Ellen, how even though it's required by law in New York, it only happens in 60 percent of the cases. So as a mother of a newborn, I would be scared.
GABLER: That's why parents need to be aware of this. Parents need to ask questions. They need to say, when is the blood sample being sent out? They do need to follow up. So if a child is sick, if a child is changing color, parents need to ask about those newborn screening tests. But again, there are 24 states that are refusing to make public the record of individual hospitals, which we find really concerning.
HEADLEE: Where do they - I mean, I assume there's a resource where a parent can go to get the list of tests that an infant needs to have done so that they can, you know, make a checklist.
GABLER: You can come to the Milwaukee Journal Sentinel's website to see which states are releasing this information and to look up the record of specific hospitals.
HEADLEE: If they're in one of those states that's not releasing those informations, then they need to speak with their OBGYN, they need to speak with their pediatrician. Who's the best person for them to go to?
GABLER: Probably their pediatrician and also the nurse at the hospital. The people who are pricking the babies heel and taking these samples. They really just need to follow up to make sure those samples are sent and make sure they get the test results.
HEADLEE: Does the federal government at some point have to get involved to make sort of very basic regulations - this is what needs to be done for infants?
GABLER: Well, for nearly 15 years, federal regulators and public health officials have discussed the need to standardize newborn screening programs throughout the country. But that was one of the things we found in this investigation - really little action has been taken, and that's a significant problem. Next - in January, there is a committee that advises the U.S. health secretary on newborn screening. But it's unclear whether they will take specific action. They haven't for 15 years.
HEADLEE: Ellen Gabler is a reporter for Wisconsin's Journal Sentinel. And she was kind enough to join us from her office in Milwaukee. Ellen, thank you so much.
GABLER: Thank you. Transcript provided by NPR, Copyright NPR.