Pulse oximetry for newborns: legislative efforts, myths, limitations, and saving lives

A 2008 article from the New York Times went sort of viral last week about pulse oximetry screening in newborns. Super cool good news that people are talking about it, but a lot of of bad information is going around. Pulse oximetry isn’t new, of course, but using it on newborns is for some reason

I’ve been told to not share what I know with woman. That, this should all come down from the medical community. But, I’m a firm believer that woman should know. That this should come as a change we all support. I know after Cora was born, she was whisked away for all these tests, and others just looked so scary to me. I want you all to know. And, it is so simple, I believe you have every right to ask your hospital or doctor to consider running the pulse oximetry on your baby even if it’s not routine at your hospital. I know if you’re here reading this you are smart enough and capable enough to do understand the limitations and the routine. I don’t believe that holding information back is helpful. CHD is killing our babies, we have to stand up against it.

The only danger I see is that woman will think this is a foul proof CHD test. It absolutely is not. It detects some of the most critical defects. And, sometimes, they don’t even present with low stats. It’s not the focus of the work I do with Cora, but something I support. It’s one tool. One easy small tool.

I advocate for woman to read up on so much more than just the pulse oximetry testing. And, to also realize that CHD is far from a death sentence, most children live, although CHD kills the most babies. It’s just that prevalent. But, some CHDs don’t even require surgery, only about 50 percent do. There’s a wide spectrum.

Pulse oximetry measures the amount of oxygen in the blood, a low number can indicate a problem with the heart or lungs.

At the end of this article, I give tips for requesting the screening. Again, I’m not a doctor though, just a mother.

My friend Annamarie at the group 1 in 100 is doing some amazing awesome work in the legislative realm with pulse oximetry screening. However, she’s having issues with her website and updating it so, she let me share this letter. It’s from members of congress to Secretary of Health and Human Services by the Senate Kathleen Sebelius. According to Annamarie, “members tweaked based on their relationships with the secretary, their constituency, or background (one congressional member is a physician, for instance).” Currently, an advisory committee is investigating congenital heart disease screening with pulse oximetry to possibly make a recommendation that it should be done routinely.  This is the same way the hearing screen recommendation first came down. After that, it would be a matter of implementation. Several hospitals already do screen newborns.

As someone engrossed in pulse oximetry screen for newborns every day, I forget what it’s like to hear about it if you never have. I hear all the time that “it doesn’t screen for that.” Well, it does. It’s just not known by all, yet.

My head wanted to explode at the amount of false information I read this week.That’s the danger of introducing something this to the birth community without giving background. I also read that trouble nursing is the only sign of congenital heart defects. It can be one sign, but is not the only sign. Anyway, the list of false information goes on and on. I’m not a pro by the way, but a mom. And, as a mom, I want other moms to be aware.

I’m including the entire letter below, but wanted to highlight some of the key points. So cool to see legislators take an interest in this by the way!

• Because of its non-invasive nature, this simple diagnostic tool is already known as “the 5th vital sign” among the health care community. (So basically it’s as easy as taking a babies temperature. It’s really basic.)
•  Of the 28,000 US infants who will die before their first birthday this year, 4,000 of them will die of heart defects – more than any other infant cause of death. 

The Letter

Secretary Sebelius,
I am writing to you today to encourage you to support a vital public health issue –
newborn screening for critical congenital heart defects (heart disease). As a longtime
advocate for maternal and child health issues, I view this is one of the greatest
unrecognized and unaddressed issues facing newborn babies in recent memory.
Each year in the US, more than 40,000 babies are diagnosed as infants with congenital
heart disease. This is indeed the most common of all birth defects – one of every 100
babies is born with CHD. This occurrence rate is ten times that of the next nearest
identified disease or disorder routinely screened for by hospitals and state departments
of health. Of the 28,000 US infants who will die before their first birthday this year, 4,000
of them will die of heart defects – more than any other infant cause of death. While
some heart defects are found through routine newborn physical exams, often
the diagnosis is not made until days, weeks, months, or even years later. The signs and
symptoms of heart defects can be subtle and may go unrecognized by
parents, caregivers and even healthcare providers.

There are many factors that create the urgency to act now in recommending routine,
universal screening for critical congenital heart disease (CCHD). Here’s what we know.

1. Low cost and easy implementation. Because of its non-invasive nature, this
simple diagnostic tool is already known as “the 5th vital sign” among the health
care community. Pulse oximetry equipment is already available in every US
hospital and birthing center – and the cost is equivalent to that of a diaper
change.

2. Avoiding late diagnosis. Each year, thousands of babies are going home from
the hospital – seemingly healthy. We know that the costs (human and financial)
of delayed diagnosis are extreme – with infants presenting in the emergency
room in shock or in heart failure – often resulting in neurological
impairment, developmental delays, more invasive procedures and potentially
death. With pulse oximetry screening, early detection and early treatment of
heart defects led to exponentially improved outcomes. Recent study data has
shown a 7-fold increase in the number of babies that can be detected before
discharge with the support of pulse oximetry screening in the newborn nursery.

3. Public Health need. We know that today, pulse oximetry can detect otherwise
undiagnosed CCHD with a very low false positive rate and costs that are less
that that of other currently mandated screening tests. It is routinely used in
nearly every hospital in the U.S. already, requires little training, and is scalable,
even in outlying areas without existing pediatric cardiology on site.

4. Necessary, embraceable standard of care. In 2003, the committee endorsed
newborn hearing screening. This has proven to be a valuable screening with
recognized long-term health savings from early detection of hearing loss.
The cost of screening for heart defects is a small fraction of hearing screening.
The accuracy is a fraction of hearing screening. The diagnosis is even more
concrete. Long-term costs are even more greatly reduced by mitigating against
multiple surgeries, neurological and developmental delays associated with late
diagnosis. And this screening saves lives – with treatments that have advanced
to the level of being truly curative.

Recent studies have shown pulse oximeter technology has made significant strides in
sensitivity and accuracy – and clinicians now know when and how to properly screen.
Remember that the same medical professionals already rely on these oximeters in the
NICU. False positive rates are extremely low – less than one-third of one percent. And
a growing number of pediatric cardiologists agree that few if any babies will require
unnecessary transport – they are either passing the screening, or measurably low, which
is cause for serious intervention.

In summary, every single argument that applies for current recommended newborn
screenings applies for screening for CCHD.

I encourage you to closely review the recommendation of your committee and
workgroup while supporting a policy that promotes early identification, treatment and
management of heart disease in newborns. Be assured that I will continue to work with
my colleagues to support states in their efforts to implement – upon your
recommendation – these crucial public health screenings that detect these hidden
diseases and disorders in babies.

Sincerely,
Rep. XXX
Member of Congres

Talking to your doctor

It’s not always easy to speak to a doctor or midwife that’s never heard of this type of screening being used like this.

But, remember, pulse oximetry is a basic vital taker, you aren’t asking for some expensive, or obscure test. You’re asking for something basic. Ask for it with the confidence you might having asking for baby’s temperature to be taken.

Introducing something new can be scary. Doctors are super smart and go to school for years. If they haven’t heard about this type of screening, it doesn’t speak to their ability, just for the need for more advocacy and awareness.

For the test, best results are after 24 hours of life and with a calm baby. As an advocate for keeping baby and mommy together, I like the test, because it can be done with mom holding and calming baby.

For months, I’ve been talking to home birth moms about it. Many or most pediatrician offices have the equipment, so asking for it at the first visit is effective. I also urge mothers to watch for those warning signs and think about risk factors.

Annamarie updates the 1in100 Facebook page often, I urge you to join the page for the latest on pulse oximetry efforts in the legislative world, and she often share reports about the effectiveness of the screening.

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