[Thorpe] Welcome to Beyond the Data.
I'm Dr. Phoebe Thorpe and here with me today is Dr. Goodstein.
He's a neonatologist at the WellSpan York Hospital
and a member of the American Academy
of Pediatrics Task Force on SIDS.
Thank you so much for joining us.
[Goodstein] Well it's a pleasure to be here today Phoebe.
Thank you for having me.
[Thorpe] Today's Public Health Grand Rounds Session was
on Sudden Unexpected Infant Deaths or SUIDs.
Many people are familiar with the term SIDS
but not so much with SUIDs.
What's the difference?
[Goodstein] Right, that's a great question.
It's really important for the public to be aware of this.
So when we look at this,
SUID kind of has many spokes to to its wheel.
So there are some rare things
like inborn errors of metabolism.
There can be episodes where babies might die
from getting too cold, but the majority of these deaths fall
into three different categories under this umbrella of SUID
and one of them is SIDS, another is accidental suffocation
and strangulations in the bed,
another category is undetermined death.
So people are familiar with SIDS,
but has a very specific definition to it.
So when we talk about SIDS, we're talking about baby
in the first year of life that dies suddenly.
It's unexpected, and then after you do a complete investigation,
there's still no cause of death.
So you have to do a full autopsy,
you have to do a death scene investigation,
you have to review the medical information about the baby,
and if you do this investigation and then you still have no cause
of death that would be considered a SIDS.
Now it gets a little confusing sometimes for even us
in the medical profession in terms of hearing
about these undetermined deaths
because in a way a SIDS is an undetermined cause of death,
but when we look at it from the point of view
of the medical examiner or the coroner they're kind
of making a determination.
These deaths are generally unobserved.
They're happening during sleep time
so nobody sees what's happening, and there's some some cases
that may be very obvious.
So if a baby is in their their crib or their bassinet,
and it's a clean environment, and they're on their back,
and they die unexpectedly,
and the autopsy isn't showing anything that's a classic
example of a SIDS.
As opposed to a suffocation death
where if a parent is sleeping on a couch
and the baby is found wedged in the cushion and the parent woke
up on top of the baby that's pretty clear-cut as well.
But then there are some cases in the middle where the baby may be
in an unsafe environment, but we're not sure
if the environmental factors played a role in that death
and sometimes the coroner
or medical examiner can't make the full determination of SIDS
or suffocation and then it remains an undetermined death.
[Thorpe] Okay.
So yeah, it is a little complicated,
but I understand it better yeah.
So interestingly, we had some success in the 90's
with reducing the SUID and SID deaths.
Can you tell me a little bit about that?
[Goodstein] Sure.
I think this is one
of the greatest public health success stories
of the late 20th century, and The American Academy
of Pediatrics lists it as one of the seven top success stories
in terms of pediatric care.
So this is really a wonderful story.
So back before the early 90's, we were having
about 8,000 babies die of these kind of sleep related deaths,
and it was fairly consistent despite such things
as using home monitors and and other interventions.
But we started seeing as people were reviewing data is
that they were finding
that babies were frequently found face down,
there was often soft bedding around them,
and one of the key research articles that came
out was actually from New Zealand in Dr. Ed Mitchell
and they did the benefits of good death scene investigation.
They were finding these lambskins and babies being faced
down almost always when they were dying
of these unexpected deaths, and so, when enough data came
out in 1992, The American Academy
of Pediatrics made a recommendation
that babies should sleep on their backs not their tummies.
And then in 1994, with other partners joining
in including the CDC, we started the Back to Sleep Campaign
and with that push to get people to keep babies on their back
to sleep we saw the rate of SIDS cut in half.
[Thorpe] Half.
[Goodstein] Cut in half which is absolutely amazing.
So you know, there are tens of thousands of people walking
around today because their parents got the message.
A simple education message has saved
so many lives putting babies on their back to sleep.
So in the 90's we had this great success
and then what happened was in after the 2000's is
that the rate of SIDS kept kind of dropping down more
but when we look at the overall number
of the sleep death they stayed flat.
The SUID deaths kind of flattened
out because what happened was we started seeing a rise
in these deaths from suffocation strangulation
which Dr. Shapiro Mendoza has some great research on showed
of quadrupling of that through the 90's and early 2000's
and other data that came out of the CDC showed another increase
of 30% from 2000 and 2010.
So people talk about what we call this diagnostic
coding shift.
So we're giving a different name to the deaths,
but the total number of deaths have really kind
of flattened out.
I think what we'll find is
if we could have more people putting their babies
on backs asleep that these numbers could really drop even
further than where we've kind of stagnated them today.
[Thorpe] Yeah.
What are the other recommendations
that they make for safe sleep?
[Goodstein] Sure.
Yeah, the The American Academy
of Pediatrics says unfortunately it's a little bit
of a long list, but but if we focus in on just the ones
that are really important for families to know about in terms
of sleep environment we want to have an uncluttered sleep space
so the baby should have a Consumer Products Safety
Commission approved device whether it's a crib
or a play yard or a bassinet.
We want them to have the baby close to them in the room
to promote breastfeeding, and breastfeeding is a great way
to reduce the risk of SIDS.
And we want a smoke-free environment,
and then we want really the the baby and mom close together
in the same room but not to be sharing the bed because we know
that there's a risk involved with that.
So we want no bumper pads in the baby sleep area,
no extra blankets, no soft bedding, no stuffed animals.
Really it should just be the baby, a firm mattress
that fits tightly in the crib, and and a firm fitting sheet.
And so and people need to know that that if it if it fits
across but it's still soft that's not okay we want really a
firm mattress and then something that's tight-fitting
on this there's nothing loose they can get
around the baby's nose or mouth
that can create a suffocation risk
or increase the risk of SIDS.
[Thorpe] So SIDS.
What else can health care providers do
to reduce these deaths?
[Goodstein] Yeah there's a lot
of good things we can do I mean we've been doing a lot
of education of providers,
but I think we need to keep doing that.
I think we need to have more consistent education,
so it's important that hospitals have safe sleep policies
that follow the AAP guidelines and recommendations,
so that one provider isn't talking about certain things
with safe sleep and another provider is saying it's okay
to do something else.
We need to model things properly
because it doesn't matter what we say.
Parents look at what we do.
So what we say is important to but I can tell you
that if we don't have the conversation parents may do just
what what they've heard from other people I can tell you
from data Dr. Colson, who spoke today, she's shown data
that only about a third of doctors talk about Back to Sleep
with new mothers, but if they do,
those mothers are three times as likely
to keep their babies on the back.
And if we talk about not sharing the bed,
then parents are much less likely to do that.
So it's definitely the the conversation is important
but it's also how we model it.
So we know that if nurses consistently keep babies
on their back in the nursery, parents are up to twice
as likely to also do the same thing at home.
And if we tell them to put the baby on the back
but then somebody brings the baby out on the side or face
down they're gonna see that and think well
if the nurse does it that's okay to do
so that's what I'm gonna do at home.
So we have to be really really consistent with our messaging,
and that messaging really should be over a continuum of time.
So we should we gain this message out prenatally.
It's really important message for obstetricians
to make sure moms aren't smoking while they're pregnant
because people focus in on secondhand smoke
after the baby is born
but if mothers don't smoke during their pregnancy we could
probably eliminate a third
of SIDs cases right off the bat there.
And that's really important for pediatricians,
and family doctors, and other practitioners to kind
of give people an "at a boy"
and tell them they're doing a good job because when you get
to that peak period of time for SIDs between one
and four months that's
when parents are really feeling the grind.
Being a parent is a really hard job.
The greatest job in the world.
It's the hardest job in the world.
You're gonna be sleep deprived.
When you get sleep-deprived,
sometimes your decision-making isn't as good, so we really want
to reinforce that message that "hey
if you're doing safe sleep recommendations you're doing a
great job" and you know even if it means a few days
where you're not getting enough sleep
and you're feeling tired that's better than having a lifetime
of having remorse that something bad happened
because we put the baby in an unsafe sleep environment.
[Thorpe]Yeah.
If people want to know more about this where would they go?
[Goodstein] That's a great question.
There's lots of places that you can find information
on the internet, but you have to be really careful.
Dr. Moon did a study that showed that many of the places
on the internet have inaccurate information about safe sleep,
so it's really important that you go to trusted resources.
So one of the best places
through the Eunice Shriver NICHD website.
If you just type in "safe to sleep", it'll take you right
to their website, and they have all the best
and up-to-date information even question and answers
about common you know misperceptions
and questions that people have.
You can also go to the AAP's website healthychildren.org
and that's the website that's designed specifically
for parents.
And then there are a bunch of different SIDs prevention groups
that have really good information
such as cribsforkids.org and first candle and places
like that have very good information as well.
The Charlie's Kids Foundation Dr. Hanke's foundation,
you'll always get great information there as well.
[Thorpe] Okay.
And The Cribs for Kids you're involved with that too?
[Goodstein] Yes, yes.
I run our local chapter that it's a wonderful program
that really promotes education for all families,
but for those families in need they can get a play yard or pack
and play or what they've developed their own brand called
Acrobat and there's really no financial testing for that.
If we identify a family that's in need,
we want to make sure before they go home
from the hospital even before they have their baby
that they have a safe place for their baby to sleep,
and they also provide other things such as the sheets,
and you can get a wearable blanket, or sleep sack,
so all these things that are important
for promoting safe sleep are available
through this organization.
[Thorpe] Oh, it sounds like it's very lovely and helpful.
[Goodstein] Yeah.
They're in pretty much in every state of the country
and they continue to expand.
I think they have somewhere between eight hundred
and a thousand chapters now across the country.
[Thorpe] Yeah, wow.
Thank you so much for joining us.
[Goodstein] Oh it's been such a pleasure to chat with you.
Thank you.
[Thorpe] Thank you.
And thank you for joining us see you next time
on Beyond the Data.