October 28, 2024 • 26 mins
October is Safe Sleep and SIDS Awareness Month. According to the National Institute for Health (NIH) SIDS is the leading cause of death among babies between one month and one year. The vast majority of deaths take place before a baby reaches six months of age. Every year there are about 3,400 cases of Sudden Unexpected Infant Deaths know as SUID in the U.S.
Alison Jacobson is the CEO of First Candle, which is a national non-profit addressing Sudden Unexpected Infant Death. They do this through community partnerships, educating families on life-saving safe sleep practices, while also providing bereavement support services to families who have tragically experienced the death of their baby from SUID or Stillbirth. Alison is a loss mom herself, her son Connor died in 1997, and she is passionate about helping save babies lives while supporting grieving families.
In this episode, we talked about SIDS and SUID prevention and how to create a safe sleeping environment for your baby. We discussed the racial disparities that exist and how mortality rates increase for black and brown babies. We also discussed how CT Paid Leave can help with time away from work with income replacement for behavioral health and mental health appointments for parents who are dealing with the emotional trauma from the loss of their baby. Alison also stressed the importance of educating about safe sleep practices to anyone who deals with a sleeping baby like grandparents and other family members as well as babysitters.
For more information about First Candle please go to: First Candle: Committed to ending Sudden Infant Death Syndrome (SIDS)
For information or to apply for benefits please go to: https://www.ctpaidleave.org/
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Nancy Barrow (00:01):
Hello Connecticut, and welcome to The Paid Leave
Podcast. The title basicallysays it all. I'm Nancy Barrow,
and I will be delving into thisnew state program and how it can
help you and your family. Thispodcast will give you
information you should knowabout Connecticut Paid Leave and
maybe just a little bit more.
Connecticut Paid Leave bringspeace of mind to your home,
(00:22):
family and workplace. Welcome toThe Paid Leave Podcast.
October is safe sleep and SIDSAwareness Month. And according
to the National Institute forHealth, SIDS is known as Sudden
Infant Death Syndrome, and it'sthe leading cause of death among
babies age between one month andone year, and the vast majority
(00:45):
of deaths take place before thebaby reaches six months of age.
Every year, there are about 3400cases of sudden, unexpected
infant deaths known as SUID inthe United States. Joining me on
this topic is Alison Jacobson.
She's the CEO of First Candle,which is a national nonprofit
addressing sudden, unexpectedinfant death. They do this
(01:08):
through community partnershipsand educating families on life
saving safe sleep practices,while also providing bereavement
support services to families whohave tragically experienced the
death of their baby from SU IDor stillbirth. Allison is a lost
mom herself and her son, Connor,died in 1997 she's passionate
(01:29):
about helping save babies liveswhile supporting grieving
families. Welcome to The PaidLeave Podcast. Alison, so glad
to have you here.
Alison Jacobson (01:41):
Thank you for having me.
Nancy Barrow (01:42):
And I'm so sorry about your son, Connor. What a
terrible loss for anyone tohandle. You know, I'm not a mom,
but I can just, you know, I'm anauntie, and so I can't imagine
how hard that is on a wholefamily.
Alison Jacobson (01:56):
It's not even just the whole family, it's an
entire community. You don'trealize how many people are
impacted, even the firstresponders, the pediatricians,
the neighbors, your church, yourcommunity, everybody is
impacted. And I can say thatwhile the pain never goes away,
(02:17):
it does change. And one of thethings that I love about First
Candle is we provide peersupport volunteers who have gone
through it, who are in a similarsituation. And what I offer and
our bereavement support directorwho lost her son Christmas Eve
morning 40 years ago, we offerhope. We offer the hope that
(02:39):
life does go on.
Nancy Barrow (02:41):
Yeah, what kind of help was offered to you back in
1997 and where did you go tofind help?
Alison Jacobson (02:50):
Well, right?
Facebook didn't exist. Theinternet existed. And so I
immediately went on, becausewhen Connor died, we were down
at Stanford Hospital, and mypediatrician said, we can't say
it for sure, but we're prettysure it sits. And so I went
online and started readingeverything I could. And at that
point, sudden infant deathsyndrome was unpreventable and
(03:13):
unpredictable. And so that was agreat challenge, and I didn't
know where to turn, and I foundwhat was First Candle at that
time the SIDS Alliance, and theyhad people to support me. They
had conferences that I could goto and really be around other
SIDS parents. Because, you know,while every loss is just tragic,
(03:36):
there's a difference between aninfant loss and a teen loss or a
partner loss. And really findingthose people who know exactly
what you're going through isjust so important.
Nancy Barrow (03:50):
Yeah, I think you know that loneliness and
isolation is part of it, right?
So that is, is really tough whenyou're grieving.
Alison Jacobson (03:59):
Yeah, and that's why, at First Candle, we
have Facebook support groups,one for infant loss, one for
stillbirth, one for miscarriage,and that's all on our website,
which is firstcandle.org We alsohave a warm line for people to
speak with, and as I said, wehave peer support volunteers who
are in the similar age range oreven geography of you.
Nancy Barrow (04:21):
Well, why don't we talk about First Candle? How did
First Candle come about?
Alison Jacobson (04:29):
So First Candle has been around for 40 years,
and as I said, it used to be theSIDs Alliance, and we had
partners all around the country,and I took over. I was on the
board of directors when Connordied, I stayed for five years,
and then went on to have myother children, and came back in
2016 as the CEO. And one of thethings I was always in PR and
(04:51):
marketing, and so I was in aunique position, because most
nonprofits have somebody runningthem who's been in it forever.
And who is a nonprofit person, Icame from the for profit world,
and I came from the messagingworld. And why that's important
is, as you said, there are about3400 cases of sleep related
(05:12):
infant death every year. Thatnumber has not changed in two
decades. Wow. And so you have tostart thinking about, well,
what's behind that? And if we'resaying the same message and
nothing's happened, we need tolook at the message itself and
the messenger. And one of thechallenges, while it's there's a
(05:33):
tremendous racial disparity,three black babies die to every
one every year, and that's thenational average. In some
places, it's four babies. InAtlanta, Georgia, four babies
are dying every week. I readthat. What is that about? Well,
unfortunately, it's racialdisparity. It's lack of access
to care because majority of thecases are on Medicaid. But it's
(05:58):
also just logistics, right? It'svery hard it to get to the
pediatrician if you are can'tget the time off of work, if you
have transportation issues, ifyou have other children to care
for. And so on the educationside of what we do is we go
directly into the community. Weidentify community partners who
are known, liked and trusted,and we train them, along with
(06:21):
doulas, dads and grandparents togive the Safe Sleep education to
families in the community wherethey're naturally gathering,
whether it's grocery stores ordaycare centers or community
centers, so we're not creatinganother barrier for them to get
into the pediatrician's office.
But I can tell you, you know,listen, the Safe Sleep
(06:42):
guidelines say babies should notbe in the same bed with you.
They should be near you, andthat's wonderful. But at first
candle, we're not just evidencebased, we're reality based, and
we all know that parents areexhausted, exhausted, right?
Yeah, and they need to go towork the next day. So what are
they doing? They're doinganything they can to get that
(07:03):
baby to sleep, and oftentimesthat means coming into bed with
them. And so we talk about saferways, because 71% of babies are
in an adult bed at some point inthe evening. 71% 71% whether
that's starting out in bed orthat's when the baby wakes up to
feed at two in the morning, andit's just easier to keep baby in
(07:25):
bed. So we need to talk aboutways to do it where it's safer,
no heavy comforters, no animals,nobody else in the bed of very
firm mattress. And so there areways to make it safer.
Nancy Barrow (07:41):
And when you're doing your education outreach,
which, which is vitallyimportant for getting the
messages to dads andgrandparents, you're right, like
they might be the the, you know,the daycare for this child, and
they need to know the correctway to let the baby sleep. So I
think that's amazing. And I Ididn't even think of that aspect
of it. You know that you reallydo need to educate everybody in
(08:03):
the family who's having contactwith the baby. But let's go back
to the racial disparities. A lotof OB-GYN clinics and hospitals,
and they're closing down. Andyou know, that's even in rural
areas and urban areas. And howdo you tackle that when some of
(08:25):
these birthing centers areclosing down because of funding
right?
Alison Jacobson (08:29):
r And, you know, going back to Atlanta, in
half the counties in Georgia,there are no longer OB GYN'S so
a young lady might have totravel for hours just to get to
a doctor's appointment, andthat's why our let's talk
community chats are soimportant. Doulas aren't the
complete answer, but they arepart of the solution, along with
(08:52):
midwives. And so with our let'stalk community chats, we're able
to go into those rural areas,identify a church or a social
service agency or a doulacollective, who does have the
reach into that community wherewe can provide the information
so a mom can come and talk tothe doula or the lactation
(09:12):
consultant or the midwife, whilea dad is talking to a dad, a
grandparent is talking to agrandparent. But you know, I
have to tell you, I feel like weare very fortunate to be here in
Connecticut, where we we dostill have the right to health
care and female reproductiverights, where in many cases,
that's no longer the case, andit is a crisis.
Nancy Barrow (09:34):
Tell me some safe sleeping habits or strategies
that new or soon to be parentsreally should know, because, you
know, there's myths likeswaddling or is that good or
bad? What what should behappening and what should they
know?
Alison Jacobson (09:50):
Well and that's why we talk a lot about the whys
behind the Safe Sleepguidelines. Because,
unfortunately, doctors will say,Do this, don't do this, but they
won't explain why. And parentswant to know. So I think the
most important thing still is tohave your baby on their back to
sleep, not side nowhere forevery sleep, nap and nighttime,
(10:12):
and have nothing else in thatbaby's area, no blanket, no
pillow, no I know, as a parent,you look at that sleep space and
say, Oh, it looks so barren.
It's just not comfortable, butthat is the safest place for
your baby to sleep. The othermyth that we always have to
counter is families thinksometimes it's safer to have the
baby on their stomach becausethey seem more comfortable, or
(10:34):
if they spit up. The reality is,if a baby is spitting up, if
they're on their back, they willturn their head from side to
side to clean to get rid ofwhat's in their mouth, whereas,
if they're in their on theirstomach, it's going to go right
back down the wrong way. So afirm flat surface, and what a
firm surface means is, if youpush your hand down on that, if
(10:56):
it leaves an indentation, it'snot firm enough. So firm, flat
on their back, with nothing inthat environment.
Nancy Barrow (11:08):
No baby bumpers?
Alison Jacobson (11:09):
Not any no bumpers, nothing in that area,
you know. And you don't want tohave extra layer of clothing,
you know. A lot of people thinkof bundling that baby up. The
rule of thumb is, if you'recomfortable, just one extra
layer on that baby and it's it'sbetter to layer with a wearable
sleep sack or something likethat for the baby.
Nancy Barrow (11:31):
How has your lived experience and the loss of
Connor helped you in the workthat you're doing?
Alison Jacobson (11:38):
Well, I'll tell you, as I said, I was in PR all
my life. And you know, whilelosing con was the most absolute
track thing I could have evergone through, while I would
always want Connor back in mylife, the fact that, look, I was
always in PR, and I thoughtthat's what I would always do,
(11:59):
but that little angel pushed mealong the path of what I was
truly meant to do, and I didn'teven know that at the time, but
for me, supporting young moms,educating families, I always
say, if I could help save onebaby's life, I would have done
something in honor of my son.
And so yes, this is my career,but this is my passion. The fact
(12:21):
that 3400 babies are still dyingevery year and we can prevent a
vast majority of them, is justunconscionable. We have the
highest infant mortality rate inthe world, in first world
countries. That is unacceptable.
Nancy Barrow (12:40):
And it's because education isn't reaching these
people, right? So how do you dothat? Where do you fill that gap
in?
Alison Jacobson (12:49):
Well, let me say there it's education, but
it's also, unfortunately, ourour culture. In other cultures,
Mom and Dad aren't going back towork for six months. They have
that time to be with baby, tobond with baby, to not be
exhausted because they have togo to work the next day. And so
(13:11):
that's one of the problems wehave in this country, is we are
not allowing that time forbreastfeeding and for safe
sleep, and in terms of theeducation, October is safe sleep
Awareness Month. There's a lotof information on our site and
our social media. Firstcandle.org where you can learn
that information. But you know,it's not just who else is
(13:33):
watching the baby. We knowthere's a lot of single dads out
there. There are a lot ofbecause of maternal mortality,
dads raising their baby on theirown, so we need to make sure
that we're also getting theinformation to dads.
Nancy Barrow (13:47):
Yeah, that's that's vital, because I didn't
even think about that. Why? AndI guess this is where
Connecticut Paid Leave comes in,right? Because Connecticut Paid
Leave gives bonding leave up to12 weeks for the parents, both
mom and dad, if they're workingand they're paying into this
program, they should takeadvantage of the fact that they
(14:09):
can take this time for bondingwith their baby, and they can
even maybe she takes the firstthree months, he takes the next
three months, so then You havesix months with that child,
right? And so I do think thatConnecticut Paid Leave can fill
in the gaps there, andespecially when you have
(14:30):
exhausted parents, you're right,they're going to fall asleep
with the baby on them. So howimportant are programs like this
to the people that you serve andhelp?
Alison Jacobson (14:40):
Well, it's really interesting. I just came
back from a conference inAtlanta, and they were talking
about paid leave, and they had afocus group with dads who said
is critical for them, becausethey want that time bonding with
their baby. They feel like momhas more time bonding, and they
want that, and they've. Knownthat it is so important, even as
(15:02):
the child gets older, that thatinitial bonding time was in
place. And so, you know, again,the same thing with
breastfeeding. Breastfeedingreduces the risk of SIDS by 50%
now I know not everybody canbreastfeed, not everybody
chooses to, but if they do, wesee such a decline when mom goes
back to work, because manypeople don't know it's the law
(15:24):
to have a place for mom tobreastfeed. But even if so, we
see that drop off inbreastfeeding when mom goes back
to work. And we know that breastmilk and breastfeeding is such a
critical health component formom and baby, yeah.
Nancy Barrow (15:41):
And they do say, when the latching is there,
there's a huge bond that happensif you can, you know, and if you
can and you pump, that's that isas significant as well. Yes. So
what would you tell people, youknow, when there's a loss that
is so big, like that peopledon't know what to say, like
(16:04):
family members friends, youdon't know what to say to that
parent, or parents who have losta child this way, what is some
advice you can give people abouthow they should talk to them?
What should they say? How canthey help them? What should they
say to them in this kind ofterrible loss?
Alison Jacobson (16:26):
Well, again, there is a problem in this
country where we don'tunderstand grief. And you, I'm
sure you've heard about thestages of grief, but the Stages
of Grief were never meant to belinear. They're circular. So
there are days when you'redenying it, then there's days
when you're angry, and thenthere's days when you're
bargaining, and then you go backto denying it. And so I think,
(16:49):
unfortunately, there is thisthought in our country where
it's like, well, it's been ayear. You should be you should
be over it by now. Why are youstill grieving? And it's a
process. It's a process thatreally goes on for so long. The
most important thing I will tellanybody who has a friend or a
(17:10):
family member who's experienceda loss, whether it's
miscarriage, stillbirth or aninfant, families want to talk
about their baby, ask them theirbaby's name, ask them to talk
about it, because the last thingwe want to do is think that
people have forgotten about ourbaby. Our baby stays with us
forever, and we never want tothink our baby's forgotten. So
(17:33):
too often, people are afraid totalk about it for fear of
upsetting the person. Trust me,you can't upset us more than we
already are, and the fact thatsomebody is caring enough to ask
about our child means so much tous and the platitudes of it was
God's will all of that, keepthat aside. Just listen. Just
(17:55):
listen. Give that family memberthe opportunity to talk, and
it's okay to cry, it's okay tohug, it's okay to say, Hey, I'm
just coming by to sit with youtoday. It's those little things
that make such a difference.
Nancy Barrow (18:13):
Yeah, and, and I think mental health, right? So
if you are depressed or you'refull of anxiety, those are
serious health conditions,according to Connecticut, paid
leave, and they do give up to 12weeks of income replacement. So
you can take some time to gettreatment. And there's, it's,
it's hard to ask for help, butyou know, there are therapists
(18:36):
who can really help. Did you tryto do that in in your grief.
Alison Jacobson (18:41):
So I went to one group, and while it was a
wonderful group, it was forparents who'd lost their child.
And as I said, it's a differentloss when it's a 16 year old
versus an infant. So for me, IThat's why I reached out to
first can, because it wasspecifically for SIDS and
(19:03):
stillbirth and I felt like I wasaround my community. And I think
that's so important to have beable to talk about something. We
always say it's the club that noone wants to belong to. But once
you're part of the club, we'reall there for you. And so as I
said, I really encourage peopleto check out first candle.org
(19:25):
for those bereavement supportservices. Additionally, we have
a gentleman on our board. Helost his baby back in 2018 and
with two other dads, he starteda podcast two years ago, guys
and brief. It is the onlypodcast in North America for men
dealing with infant loss, andit's just a fabulous resource,
(19:47):
because the grief process forfor men looks very different
than women.
Nancy Barrow (19:51):
What is it? So tell me what the differences
are. Can you tell me a fewdifferences for dads who might
be listening?
Alison Jacobson (19:58):
Yeah, you know, for. Women, usually that grief
is looking back and what'smissing for dads, it what it's
what would have been lookingforward, missing all the things
that would have been we oftenhave dads call our grief line,
and they're whispering outsidebecause they don't want their
partner to know. They callbecause they feel like they need
(20:20):
to be stronger. They feel likethey can't show it. And men tend
to express their grief morephysically. They'll play
basketball, they'll run they'lldo things like that. They don't
talk through their feelings.
They act through their feelings.
And that's very isolating forwomen who are trying to have
those conversations. The otherthing is, men want to fix it.
(20:40):
You can't fix grief.No, you canonly go through grief. And so
understanding that your partneris grieving different than you
is really important to give eachother that safe space to grieve
in the same way or to grieve intheir own way.
Nancy Barrow (20:58):
That's interesting that they started the podcast.
Yeah, you know, and you don'treally think of the differences
in how each parent might begrieving, and to know that is
empowering in a way.
Alison Jacobson (21:12):
Yeah it's also racially. Black women
historically aren't allowed togrieve, first of all, for so
many black women, they have theythey're just worried about their
children not dying of gunshots.
They're so busy caring for theentire family, they're not
allowed to grieve. They don'thave the time to grieve. And
(21:33):
there is the impression of thestrong black woman who doesn't
breathe. And so whenever we'respeaking in a group with black
women. We always ask them to saytheir baby's name, and we hold
space for them to really be ableto grieve. It's not easy. It's
not easy, and there's not, youknow, a lot of access to mental
(21:54):
health care there, either, andso that's just another hurdle
for them to get through so they,you know how it's important for
them to to be able to be takencare of.
Nancy Barrow (22:06):
Yeah, you know, what are some of the resources
available, and who can parentsget in touch with to find out
more?
Alison Jacobson (22:15):
So to find out more, as I said, you can go to
firstandle.org. We have a tabfor bereavement support, we have
a tab for community outreachthat talks about all our
programs in the community andhow you can get involved. There
is certainly the donate button,because we are a nonprofit, and
all of our focus is onsupporting the community with
(22:35):
products they need as well,swaddles, pacifiers, all of
that. So that is the best way toget involved. You can find us on
Instagram, First Candle and alsoon Facebook.
Nancy Barrow (22:51):
It SIDS awareness and safe sleeping month. And
what would you like people totake away from this podcast?
Alison Jacobson (22:59):
I think two things from the education side
of Safe Sleep awareness, it isnever too soon to start talking
and getting educated about safesleep. Babysitters need to
understand about this.
Grandparents need to understandabout this. You know, in high
schools, the first personsometimes that knows somebody is
pregnant, is that school nurse,and so it's critical that
(23:23):
everybody understand about theSafe Sleep guidelines and safe
sleep practices. But alsoOctober 15 is pregnancy and
infant loss Remembrance Day. Andall around the world, candles
are lit on October 15 toremember all our angels who are
gone too soon. And so if youknow somebody who has
(23:46):
experienced a stillbirth, amiscarriage or an infant loss,
just say to them that day, hey,I'm thinking of you, because it
really means so much to us toknow that other people are
thinking about our babies aswell.
Nancy Barrow (24:03):
Any last thoughts about how Connecticut Paid Leave
can help? You know, even ifyou're a caregiver, like we have
caregiver leave, right? So, andour caregiver leave has a
broader definition of family, soit doesn't have to be blood
related. It can be by affinity,which could be a neighbor, your
best friend and aunt that mightbe taking care of a parent who
(24:24):
has had this terrible loss,especially a single mom or a
single dad?
Alison Jacobson (24:27):
Yeah, yeah.
It's it's so important to takethe time available to you when
you have a new baby, becauseyou've got to take care of
yourself and your partner. We'reall exhausted. Take that time
for yourself, because you needit. You need it for yourself,
and you need it for your baby,and if you have experienced that
(24:49):
loss again, take that time.
Grief doesn't go away. It doesget better, I promise you, and
I'm here for hope. Um. But takethat time, because you may think
you're okay, but it'll comeright back at you when you least
expect it.
Nancy Barrow (25:06):
And what would you like us to know about Connor?
Alison Jacobson (25:09):
Oh my gosh, my perfect little baby, Connor.
Connor made me who I am today.
Connor impacted more peoplearound this world than I ever
knew he would. And every day,when I talk to another parent
who's lost a baby, I say alittle prayer to Connor, saying,
Please give me the right words.
And whenever I'm educatingfamilies, I can see my little
(25:33):
angel over me saying, right on,mom.
Nancy Barrow (25:37):
That's so sweet.
Any last thoughts you would liketo share with our audience.
Alison Jacobson (25:42):
Please, please, please, understand the safest
thing you can do is have aseparate space for your baby to
sleep in your room. Keep allblankets, pillows, stuffed
animals away from your baby,because they can kill your baby.
Nancy Barrow (25:58):
I want to thank my guest, Allison Jacobson, the CEO
of First Candle, which is anational nonprofit addressing
sudden, unexpected infant death.
Thank you so much for being onThe Paid Leave Podcast. It was a
real pleasure talking to you.
Alison Jacobson (26:10):
Thank you so much for having me and for what
you're doing.
Nancy Barrow (26:13):
For information about First Candle, please go to
first candle.orgAnd for information or to apply
for benefits, please go toctpaileave.org This has been
another edition of The PaidLeave Podcast. Please like and
subscribe so you'll be notifiedabout new podcasts that become
available. Connecticut PaidLeave is a public act with a
personal purpose. I'm NancyBarrow, and thanks for
(26:36):
listening.
Hello Connecticut, and welcome to The Paid Leave
Podcast. The title basicallysays it all. I'm Nancy Barrow,
and I will be delving into thisnew state program and how it can
help you and your family. Thispodcast will give you
information you should knowabout Connecticut Paid Leave and
maybe just a little bit more.
Connecticut Paid Leave bringspeace of mind to your home,
(00:22):
family and workplace. Welcome toThe Paid Leave Podcast.
October is safe sleep and SIDSAwareness Month. And according
to the National Institute forHealth, SIDS is known as Sudden
Infant Death Syndrome, and it'sthe leading cause of death among
babies age between one month andone year, and the vast majority
(00:45):
of deaths take place before thebaby reaches six months of age.
Every year, there are about 3400cases of sudden, unexpected
infant deaths known as SUID inthe United States. Joining me on
this topic is Alison Jacobson.
She's the CEO of First Candle,which is a national nonprofit
addressing sudden, unexpectedinfant death. They do this
(01:08):
through community partnershipsand educating families on life
saving safe sleep practices,while also providing bereavement
support services to families whohave tragically experienced the
death of their baby from SU IDor stillbirth. Allison is a lost
mom herself and her son, Connor,died in 1997 she's passionate
(01:29):
about helping save babies liveswhile supporting grieving
families. Welcome to The PaidLeave Podcast. Alison, so glad
to have you here.
Alison Jacobson (01:41):
Thank you for having me.
Nancy Barrow (01:42):
And I'm so sorry about your son, Connor. What a
terrible loss for anyone tohandle. You know, I'm not a mom,
but I can just, you know, I'm anauntie, and so I can't imagine
how hard that is on a wholefamily.
Alison Jacobson (01:56):
It's not even just the whole family, it's an
entire community. You don'trealize how many people are
impacted, even the firstresponders, the pediatricians,
the neighbors, your church, yourcommunity, everybody is
impacted. And I can say thatwhile the pain never goes away,
(02:17):
it does change. And one of thethings that I love about First
Candle is we provide peersupport volunteers who have gone
through it, who are in a similarsituation. And what I offer and
our bereavement support directorwho lost her son Christmas Eve
morning 40 years ago, we offerhope. We offer the hope that
(02:39):
life does go on.
Nancy Barrow (02:41):
Yeah, what kind of help was offered to you back in
1997 and where did you go tofind help?
Alison Jacobson (02:50):
Well, right?
Facebook didn't exist. Theinternet existed. And so I
immediately went on, becausewhen Connor died, we were down
at Stanford Hospital, and mypediatrician said, we can't say
it for sure, but we're prettysure it sits. And so I went
online and started readingeverything I could. And at that
point, sudden infant deathsyndrome was unpreventable and
(03:13):
unpredictable. And so that was agreat challenge, and I didn't
know where to turn, and I foundwhat was First Candle at that
time the SIDS Alliance, and theyhad people to support me. They
had conferences that I could goto and really be around other
SIDS parents. Because, you know,while every loss is just tragic,
(03:36):
there's a difference between aninfant loss and a teen loss or a
partner loss. And really findingthose people who know exactly
what you're going through isjust so important.
Nancy Barrow (03:50):
Yeah, I think you know that loneliness and
isolation is part of it, right?
So that is, is really tough whenyou're grieving.
Alison Jacobson (03:59):
Yeah, and that's why, at First Candle, we
have Facebook support groups,one for infant loss, one for
stillbirth, one for miscarriage,and that's all on our website,
which is firstcandle.org We alsohave a warm line for people to
speak with, and as I said, wehave peer support volunteers who
are in the similar age range oreven geography of you.
Nancy Barrow (04:21):
Well, why don't we talk about First Candle? How did
First Candle come about?
Alison Jacobson (04:29):
So First Candle has been around for 40 years,
and as I said, it used to be theSIDs Alliance, and we had
partners all around the country,and I took over. I was on the
board of directors when Connordied, I stayed for five years,
and then went on to have myother children, and came back in
2016 as the CEO. And one of thethings I was always in PR and
(04:51):
marketing, and so I was in aunique position, because most
nonprofits have somebody runningthem who's been in it forever.
And who is a nonprofit person, Icame from the for profit world,
and I came from the messagingworld. And why that's important
is, as you said, there are about3400 cases of sleep related
(05:12):
infant death every year. Thatnumber has not changed in two
decades. Wow. And so you have tostart thinking about, well,
what's behind that? And if we'resaying the same message and
nothing's happened, we need tolook at the message itself and
the messenger. And one of thechallenges, while it's there's a
(05:33):
tremendous racial disparity,three black babies die to every
one every year, and that's thenational average. In some
places, it's four babies. InAtlanta, Georgia, four babies
are dying every week. I readthat. What is that about? Well,
unfortunately, it's racialdisparity. It's lack of access
to care because majority of thecases are on Medicaid. But it's
(05:58):
also just logistics, right? It'svery hard it to get to the
pediatrician if you are can'tget the time off of work, if you
have transportation issues, ifyou have other children to care
for. And so on the educationside of what we do is we go
directly into the community. Weidentify community partners who
are known, liked and trusted,and we train them, along with
(06:21):
doulas, dads and grandparents togive the Safe Sleep education to
families in the community wherethey're naturally gathering,
whether it's grocery stores ordaycare centers or community
centers, so we're not creatinganother barrier for them to get
into the pediatrician's office.
But I can tell you, you know,listen, the Safe Sleep
(06:42):
guidelines say babies should notbe in the same bed with you.
They should be near you, andthat's wonderful. But at first
candle, we're not just evidencebased, we're reality based, and
we all know that parents areexhausted, exhausted, right?
Yeah, and they need to go towork the next day. So what are
they doing? They're doinganything they can to get that
(07:03):
baby to sleep, and oftentimesthat means coming into bed with
them. And so we talk about saferways, because 71% of babies are
in an adult bed at some point inthe evening. 71% 71% whether
that's starting out in bed orthat's when the baby wakes up to
feed at two in the morning, andit's just easier to keep baby in
(07:25):
bed. So we need to talk aboutways to do it where it's safer,
no heavy comforters, no animals,nobody else in the bed of very
firm mattress. And so there areways to make it safer.
Nancy Barrow (07:41):
And when you're doing your education outreach,
which, which is vitallyimportant for getting the
messages to dads andgrandparents, you're right, like
they might be the the, you know,the daycare for this child, and
they need to know the correctway to let the baby sleep. So I
think that's amazing. And I Ididn't even think of that aspect
of it. You know that you reallydo need to educate everybody in
(08:03):
the family who's having contactwith the baby. But let's go back
to the racial disparities. A lotof OB-GYN clinics and hospitals,
and they're closing down. Andyou know, that's even in rural
areas and urban areas. And howdo you tackle that when some of
(08:25):
these birthing centers areclosing down because of funding
right?
Alison Jacobson (08:29):
r And, you know, going back to Atlanta, in
half the counties in Georgia,there are no longer OB GYN'S so
a young lady might have totravel for hours just to get to
a doctor's appointment, andthat's why our let's talk
community chats are soimportant. Doulas aren't the
complete answer, but they arepart of the solution, along with
(08:52):
midwives. And so with our let'stalk community chats, we're able
to go into those rural areas,identify a church or a social
service agency or a doulacollective, who does have the
reach into that community wherewe can provide the information
so a mom can come and talk tothe doula or the lactation
(09:12):
consultant or the midwife, whilea dad is talking to a dad, a
grandparent is talking to agrandparent. But you know, I
have to tell you, I feel like weare very fortunate to be here in
Connecticut, where we we dostill have the right to health
care and female reproductiverights, where in many cases,
that's no longer the case, andit is a crisis.
Nancy Barrow (09:34):
Tell me some safe sleeping habits or strategies
that new or soon to be parentsreally should know, because, you
know, there's myths likeswaddling or is that good or
bad? What what should behappening and what should they
know?
Alison Jacobson (09:50):
Well and that's why we talk a lot about the whys
behind the Safe Sleepguidelines. Because,
unfortunately, doctors will say,Do this, don't do this, but they
won't explain why. And parentswant to know. So I think the
most important thing still is tohave your baby on their back to
sleep, not side nowhere forevery sleep, nap and nighttime,
(10:12):
and have nothing else in thatbaby's area, no blanket, no
pillow, no I know, as a parent,you look at that sleep space and
say, Oh, it looks so barren.
It's just not comfortable, butthat is the safest place for
your baby to sleep. The othermyth that we always have to
counter is families thinksometimes it's safer to have the
baby on their stomach becausethey seem more comfortable, or
(10:34):
if they spit up. The reality is,if a baby is spitting up, if
they're on their back, they willturn their head from side to
side to clean to get rid ofwhat's in their mouth, whereas,
if they're in their on theirstomach, it's going to go right
back down the wrong way. So afirm flat surface, and what a
firm surface means is, if youpush your hand down on that, if
(10:56):
it leaves an indentation, it'snot firm enough. So firm, flat
on their back, with nothing inthat environment.
Nancy Barrow (11:08):
No baby bumpers?
Alison Jacobson (11:09):
Not any no bumpers, nothing in that area,
you know. And you don't want tohave extra layer of clothing,
you know. A lot of people thinkof bundling that baby up. The
rule of thumb is, if you'recomfortable, just one extra
layer on that baby and it's it'sbetter to layer with a wearable
sleep sack or something likethat for the baby.
Nancy Barrow (11:31):
How has your lived experience and the loss of
Connor helped you in the workthat you're doing?
Alison Jacobson (11:38):
Well, I'll tell you, as I said, I was in PR all
my life. And you know, whilelosing con was the most absolute
track thing I could have evergone through, while I would
always want Connor back in mylife, the fact that, look, I was
always in PR, and I thoughtthat's what I would always do,
(11:59):
but that little angel pushed mealong the path of what I was
truly meant to do, and I didn'teven know that at the time, but
for me, supporting young moms,educating families, I always
say, if I could help save onebaby's life, I would have done
something in honor of my son.
And so yes, this is my career,but this is my passion. The fact
(12:21):
that 3400 babies are still dyingevery year and we can prevent a
vast majority of them, is justunconscionable. We have the
highest infant mortality rate inthe world, in first world
countries. That is unacceptable.
Nancy Barrow (12:40):
And it's because education isn't reaching these
people, right? So how do you dothat? Where do you fill that gap
in?
Alison Jacobson (12:49):
Well, let me say there it's education, but
it's also, unfortunately, ourour culture. In other cultures,
Mom and Dad aren't going back towork for six months. They have
that time to be with baby, tobond with baby, to not be
exhausted because they have togo to work the next day. And so
(13:11):
that's one of the problems wehave in this country, is we are
not allowing that time forbreastfeeding and for safe
sleep, and in terms of theeducation, October is safe sleep
Awareness Month. There's a lotof information on our site and
our social media. Firstcandle.org where you can learn
that information. But you know,it's not just who else is
(13:33):
watching the baby. We knowthere's a lot of single dads out
there. There are a lot ofbecause of maternal mortality,
dads raising their baby on theirown, so we need to make sure
that we're also getting theinformation to dads.
Nancy Barrow (13:47):
Yeah, that's that's vital, because I didn't
even think about that. Why? AndI guess this is where
Connecticut Paid Leave comes in,right? Because Connecticut Paid
Leave gives bonding leave up to12 weeks for the parents, both
mom and dad, if they're workingand they're paying into this
program, they should takeadvantage of the fact that they
(14:09):
can take this time for bondingwith their baby, and they can
even maybe she takes the firstthree months, he takes the next
three months, so then You havesix months with that child,
right? And so I do think thatConnecticut Paid Leave can fill
in the gaps there, andespecially when you have
(14:30):
exhausted parents, you're right,they're going to fall asleep
with the baby on them. So howimportant are programs like this
to the people that you serve andhelp?
Alison Jacobson (14:40):
Well, it's really interesting. I just came
back from a conference inAtlanta, and they were talking
about paid leave, and they had afocus group with dads who said
is critical for them, becausethey want that time bonding with
their baby. They feel like momhas more time bonding, and they
want that, and they've. Knownthat it is so important, even as
(15:02):
the child gets older, that thatinitial bonding time was in
place. And so, you know, again,the same thing with
breastfeeding. Breastfeedingreduces the risk of SIDS by 50%
now I know not everybody canbreastfeed, not everybody
chooses to, but if they do, wesee such a decline when mom goes
back to work, because manypeople don't know it's the law
(15:24):
to have a place for mom tobreastfeed. But even if so, we
see that drop off inbreastfeeding when mom goes back
to work. And we know that breastmilk and breastfeeding is such a
critical health component formom and baby, yeah.
Nancy Barrow (15:41):
And they do say, when the latching is there,
there's a huge bond that happensif you can, you know, and if you
can and you pump, that's that isas significant as well. Yes. So
what would you tell people, youknow, when there's a loss that
is so big, like that peopledon't know what to say, like
(16:04):
family members friends, youdon't know what to say to that
parent, or parents who have losta child this way, what is some
advice you can give people abouthow they should talk to them?
What should they say? How canthey help them? What should they
say to them in this kind ofterrible loss?
Alison Jacobson (16:26):
Well, again, there is a problem in this
country where we don'tunderstand grief. And you, I'm
sure you've heard about thestages of grief, but the Stages
of Grief were never meant to belinear. They're circular. So
there are days when you'redenying it, then there's days
when you're angry, and thenthere's days when you're
bargaining, and then you go backto denying it. And so I think,
(16:49):
unfortunately, there is thisthought in our country where
it's like, well, it's been ayear. You should be you should
be over it by now. Why are youstill grieving? And it's a
process. It's a process thatreally goes on for so long. The
most important thing I will tellanybody who has a friend or a
(17:10):
family member who's experienceda loss, whether it's
miscarriage, stillbirth or aninfant, families want to talk
about their baby, ask them theirbaby's name, ask them to talk
about it, because the last thingwe want to do is think that
people have forgotten about ourbaby. Our baby stays with us
forever, and we never want tothink our baby's forgotten. So
(17:33):
too often, people are afraid totalk about it for fear of
upsetting the person. Trust me,you can't upset us more than we
already are, and the fact thatsomebody is caring enough to ask
about our child means so much tous and the platitudes of it was
God's will all of that, keepthat aside. Just listen. Just
(17:55):
listen. Give that family memberthe opportunity to talk, and
it's okay to cry, it's okay tohug, it's okay to say, Hey, I'm
just coming by to sit with youtoday. It's those little things
that make such a difference.
Nancy Barrow (18:13):
Yeah, and, and I think mental health, right? So
if you are depressed or you'refull of anxiety, those are
serious health conditions,according to Connecticut, paid
leave, and they do give up to 12weeks of income replacement. So
you can take some time to gettreatment. And there's, it's,
it's hard to ask for help, butyou know, there are therapists
(18:36):
who can really help. Did you tryto do that in in your grief.
Alison Jacobson (18:41):
So I went to one group, and while it was a
wonderful group, it was forparents who'd lost their child.
And as I said, it's a differentloss when it's a 16 year old
versus an infant. So for me, IThat's why I reached out to
first can, because it wasspecifically for SIDS and
(19:03):
stillbirth and I felt like I wasaround my community. And I think
that's so important to have beable to talk about something. We
always say it's the club that noone wants to belong to. But once
you're part of the club, we'reall there for you. And so as I
said, I really encourage peopleto check out first candle.org
(19:25):
for those bereavement supportservices. Additionally, we have
a gentleman on our board. Helost his baby back in 2018 and
with two other dads, he starteda podcast two years ago, guys
and brief. It is the onlypodcast in North America for men
dealing with infant loss, andit's just a fabulous resource,
(19:47):
because the grief process forfor men looks very different
than women.
Nancy Barrow (19:51):
What is it? So tell me what the differences
are. Can you tell me a fewdifferences for dads who might
be listening?
Alison Jacobson (19:58):
Yeah, you know, for. Women, usually that grief
is looking back and what'smissing for dads, it what it's
what would have been lookingforward, missing all the things
that would have been we oftenhave dads call our grief line,
and they're whispering outsidebecause they don't want their
partner to know. They callbecause they feel like they need
(20:20):
to be stronger. They feel likethey can't show it. And men tend
to express their grief morephysically. They'll play
basketball, they'll run they'lldo things like that. They don't
talk through their feelings.
They act through their feelings.
And that's very isolating forwomen who are trying to have
those conversations. The otherthing is, men want to fix it.
(20:40):
You can't fix grief.No, you canonly go through grief. And so
understanding that your partneris grieving different than you
is really important to give eachother that safe space to grieve
in the same way or to grieve intheir own way.
Nancy Barrow (20:58):
That's interesting that they started the podcast.
Yeah, you know, and you don'treally think of the differences
in how each parent might begrieving, and to know that is
empowering in a way.
Alison Jacobson (21:12):
Yeah it's also racially. Black women
historically aren't allowed togrieve, first of all, for so
many black women, they have theythey're just worried about their
children not dying of gunshots.
They're so busy caring for theentire family, they're not
allowed to grieve. They don'thave the time to grieve. And
(21:33):
there is the impression of thestrong black woman who doesn't
breathe. And so whenever we'respeaking in a group with black
women. We always ask them to saytheir baby's name, and we hold
space for them to really be ableto grieve. It's not easy. It's
not easy, and there's not, youknow, a lot of access to mental
(21:54):
health care there, either, andso that's just another hurdle
for them to get through so they,you know how it's important for
them to to be able to be takencare of.
Nancy Barrow (22:06):
Yeah, you know, what are some of the resources
available, and who can parentsget in touch with to find out
more?
Alison Jacobson (22:15):
So to find out more, as I said, you can go to
firstandle.org. We have a tabfor bereavement support, we have
a tab for community outreachthat talks about all our
programs in the community andhow you can get involved. There
is certainly the donate button,because we are a nonprofit, and
all of our focus is onsupporting the community with
(22:35):
products they need as well,swaddles, pacifiers, all of
that. So that is the best way toget involved. You can find us on
Instagram, First Candle and alsoon Facebook.
Nancy Barrow (22:51):
It SIDS awareness and safe sleeping month. And
what would you like people totake away from this podcast?
Alison Jacobson (22:59):
I think two things from the education side
of Safe Sleep awareness, it isnever too soon to start talking
and getting educated about safesleep. Babysitters need to
understand about this.
Grandparents need to understandabout this. You know, in high
schools, the first personsometimes that knows somebody is
pregnant, is that school nurse,and so it's critical that
(23:23):
everybody understand about theSafe Sleep guidelines and safe
sleep practices. But alsoOctober 15 is pregnancy and
infant loss Remembrance Day. Andall around the world, candles
are lit on October 15 toremember all our angels who are
gone too soon. And so if youknow somebody who has
(23:46):
experienced a stillbirth, amiscarriage or an infant loss,
just say to them that day, hey,I'm thinking of you, because it
really means so much to us toknow that other people are
thinking about our babies aswell.
Nancy Barrow (24:03):
Any last thoughts about how Connecticut Paid Leave
can help? You know, even ifyou're a caregiver, like we have
caregiver leave, right? So, andour caregiver leave has a
broader definition of family, soit doesn't have to be blood
related. It can be by affinity,which could be a neighbor, your
best friend and aunt that mightbe taking care of a parent who
(24:24):
has had this terrible loss,especially a single mom or a
single dad?
Alison Jacobson (24:27):
Yeah, yeah.
It's it's so important to takethe time available to you when
you have a new baby, becauseyou've got to take care of
yourself and your partner. We'reall exhausted. Take that time
for yourself, because you needit. You need it for yourself,
and you need it for your baby,and if you have experienced that
(24:49):
loss again, take that time.
Grief doesn't go away. It doesget better, I promise you, and
I'm here for hope. Um. But takethat time, because you may think
you're okay, but it'll comeright back at you when you least
expect it.
Nancy Barrow (25:06):
And what would you like us to know about Connor?
Alison Jacobson (25:09):
Oh my gosh, my perfect little baby, Connor.
Connor made me who I am today.
Connor impacted more peoplearound this world than I ever
knew he would. And every day,when I talk to another parent
who's lost a baby, I say alittle prayer to Connor, saying,
Please give me the right words.
And whenever I'm educatingfamilies, I can see my little
(25:33):
angel over me saying, right on,mom.
Nancy Barrow (25:37):
That's so sweet.
Any last thoughts you would liketo share with our audience.
Alison Jacobson (25:42):
Please, please, please, understand the safest
thing you can do is have aseparate space for your baby to
sleep in your room. Keep allblankets, pillows, stuffed
animals away from your baby,because they can kill your baby.
Nancy Barrow (25:58):
I want to thank my guest, Allison Jacobson, the CEO
of First Candle, which is anational nonprofit addressing
sudden, unexpected infant death.
Thank you so much for being onThe Paid Leave Podcast. It was a
real pleasure talking to you.
Alison Jacobson (26:10):
Thank you so much for having me and for what
you're doing.
Nancy Barrow (26:13):
For information about First Candle, please go to
first candle.orgAnd for information or to apply
for benefits, please go toctpaileave.org This has been
another edition of The PaidLeave Podcast. Please like and
subscribe so you'll be notifiedabout new podcasts that become
available. Connecticut PaidLeave is a public act with a
personal purpose. I'm NancyBarrow, and thanks for
(26:36):
listening.
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