The Paid Leave Podcast

How to Keep Your Baby Safe When They Are Sleeping

• The Connecticut Paid Leave Authority • Season 3 • Episode 25

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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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Nancy Barrow:

Hello Connecticut, and welcome to The Paid Leave Podcast. The title basically says it all. I'm Nancy Barrow, and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut Paid Leave and maybe just a little bit more. Connecticut Paid Leave brings peace of mind to your home, family and workplace. Welcome to The Paid Leave Podcast. October is safe sleep and SIDS Awareness Month. And according to the National Institute for Health, SIDS is known as Sudden Infant Death Syndrome, and it's the leading cause of death among babies age between one month and one year, and the vast majority of deaths take place before the baby reaches six months of age. Every year, there are about 3400 cases of sudden, unexpected infant deaths known as SUID in the United States. Joining me on this topic is Alison Jacobson. She's the CEO of First Candle, which is a national nonprofit addressing sudden, unexpected infant death. They do this through community partnerships and 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 SU ID or stillbirth. Allison is a lost mom herself and her son, Connor, died in 1997 she's passionate about helping save babies lives while supporting grieving families. Welcome to The Paid Leave Podcast. Alison, so glad to have you here.

Alison Jacobson:

Thank you for having me.

Nancy Barrow:

And I'm so sorry about your son, Connor. What a terrible loss for anyone to handle. You know, I'm not a mom, but I can just, you know, I'm an auntie, and so I can't imagine how hard that is on a whole family.

Alison Jacobson:

It's not even just the whole family, it's an entire community. You don't realize how many people are impacted, even the first responders, the pediatricians, the neighbors, your church, your community, everybody is impacted. And I can say that while the pain never goes away, it does change. And one of the things that I love about First Candle is we provide peer support volunteers who have gone through it, who are in a similar situation. And what I offer and our bereavement support director who lost her son Christmas Eve morning 40 years ago, we offer hope. We offer the hope that life does go on.

Nancy Barrow:

Yeah, what kind of help was offered to you back in 1997 and where did you go to find help?

Alison Jacobson:

Well, right? Facebook didn't exist. The internet existed. And so I immediately went on, because when Connor died, we were down at Stanford Hospital, and my pediatrician said, we can't say it for sure, but we're pretty sure it sits. And so I went online and started reading everything I could. And at that point, sudden infant death syndrome was unpreventable and unpredictable. And so that was a great challenge, and I didn't know where to turn, and I found what was First Candle at that time the SIDS Alliance, and they had people to support me. They had conferences that I could go to and really be around other SIDS parents. Because, you know, while every loss is just tragic, there's a difference between an infant loss and a teen loss or a partner loss. And really finding those people who know exactly what you're going through is just so important.

Nancy Barrow:

Yeah, I think you know that loneliness and isolation is part of it, right? So that is, is really tough when you're grieving.

Alison Jacobson:

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 also have a warm line for people to speak with, and as I said, we have peer support volunteers who are in the similar age range or even geography of you.

Nancy Barrow:

Well, why don't we talk about First Candle? How did First Candle come about?

Alison Jacobson:

So First Candle has been around for 40 years, and as I said, it used to be the SIDs Alliance, and we had partners all around the country, and I took over. I was on the board of directors when Connor died, I stayed for five years, and then went on to have my other children, and came back in 2016 as the CEO. And one of the things I was always in PR and marketing, and so I was in a unique position, because most nonprofits have somebody running them who's been in it forever. And who is a nonprofit person, I came from the for profit world, and I came from the messaging world. And why that's important is, as you said, there are about 3400 cases of sleep related infant death every year. That number has not changed in two decades. Wow. And so you have to start thinking about, well, what's behind that? And if we're saying the same message and nothing's happened, we need to look at the message itself and the messenger. And one of the challenges, while it's there's a tremendous racial disparity, three black babies die to every one every year, and that's the national average. In some places, it's four babies. In Atlanta, Georgia, four babies are dying every week. I read that. What is that about? Well, unfortunately, it's racial disparity. It's lack of access to care because majority of the cases are on Medicaid. But it's also just logistics, right? It's very hard it to get to the pediatrician if you are can't get the time off of work, if you have transportation issues, if you have other children to care for. And so on the education side of what we do is we go directly into the community. We identify community partners who are known, liked and trusted, and we train them, along with doulas, dads and grandparents to give the Safe Sleep education to families in the community where they're naturally gathering, whether it's grocery stores or daycare centers or community centers, so we're not creating another barrier for them to get into the pediatrician's office. But I can tell you, you know, listen, the Safe Sleep guidelines say babies should not be in the same bed with you. They should be near you, and that's wonderful. But at first candle, we're not just evidence based, we're reality based, and we all know that parents are exhausted, exhausted, right? Yeah, and they need to go to work the next day. So what are they doing? They're doing anything they can to get that baby to sleep, and oftentimes that means coming into bed with them. And so we talk about safer ways, because 71% of babies are in an adult bed at some point in the evening. 71% 71% whether that's starting out in bed or that's when the baby wakes up to feed at two in the morning, and it's just easier to keep baby in bed. So we need to talk about ways to do it where it's safer, no heavy comforters, no animals, nobody else in the bed of very firm mattress. And so there are ways to make it safer.

Nancy Barrow:

And when you're doing your education outreach, which, which is vitally important for getting the messages to dads and grandparents, you're right, like they might be the the, you know, the daycare for this child, and they need to know the correct way to let the baby sleep. So I think that's amazing. And I I didn't even think of that aspect of it. You know that you really do need to educate everybody in the family who's having contact with the baby. But let's go back to the racial disparities. A lot of OB-GYN clinics and hospitals, and they're closing down. And you know, that's even in rural areas and urban areas. And how do you tackle that when some of these birthing centers are closing down because of funding right?

Alison Jacobson:

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 to travel for hours just to get to a doctor's appointment, and that's why our let's talk community chats are so important. Doulas aren't the complete answer, but they are part of the solution, along with midwives. And so with our let's talk community chats, we're able to go into those rural areas, identify a church or a social service agency or a doula collective, who does have the reach into that community where we can provide the information so a mom can come and talk to the doula or the lactation consultant or the midwife, while a dad is talking to a dad, a grandparent is talking to a grandparent. But you know, I have to tell you, I feel like we are very fortunate to be here in Connecticut, where we we do still have the right to health care and female reproductive rights, where in many cases, that's no longer the case, and it is a crisis.

Nancy Barrow:

Tell me some safe sleeping habits or strategies that new or soon to be parents really should know, because, you know, there's myths like swaddling or is that good or bad? What what should be happening and what should they know?

Alison Jacobson:

Well and that's why we talk a lot about the whys behind the Safe Sleep guidelines. Because, unfortunately, doctors will say, Do this, don't do this, but they won't explain why. And parents want to know. So I think the most important thing still is to have your baby on their back to sleep, not side nowhere for every sleep, nap and nighttime, and have nothing else in that baby'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, but that is the safest place for your baby to sleep. The other myth that we always have to counter is families think sometimes it's safer to have the baby on their stomach because they seem more comfortable, or if they spit up. The reality is, if a baby is spitting up, if they're on their back, they will turn their head from side to side to clean to get rid of what's in their mouth, whereas, if they're in their on their stomach, it's going to go right back down the wrong way. So a firm flat surface, and what a firm surface means is, if you push your hand down on that, if it leaves an indentation, it's not firm enough. So firm, flat on their back, with nothing in that environment.

Nancy Barrow:

No baby bumpers?

Alison Jacobson:

Not any no bumpers, nothing in that area, you know. And you don't want to have extra layer of clothing, you know. A lot of people think of bundling that baby up. The rule of thumb is, if you're comfortable, just one extra layer on that baby and it's it's better to layer with a wearable sleep sack or something like that for the baby.

Nancy Barrow:

How has your lived experience and the loss of Connor helped you in the work that you're doing?

Alison Jacobson:

Well, I'll tell you, as I said, I was in PR all my life. And you know, while losing con was the most absolute track thing I could have ever gone through, while I would always want Connor back in my life, the fact that, look, I was always in PR, and I thought that's what I would always do, but that little angel pushed me along the path of what I was truly meant to do, and I didn't even know that at the time, but for me, supporting young moms, educating families, I always say, if I could help save one baby'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 that 3400 babies are still dying every year and we can prevent a vast majority of them, is just unconscionable. We have the highest infant mortality rate in the world, in first world countries. That is unacceptable.

Nancy Barrow:

And it's because education isn't reaching these people, right? So how do you do that? Where do you fill that gap in?

Alison Jacobson:

Well, let me say there it's education, but it's also, unfortunately, our our culture. In other cultures, Mom and Dad aren't going back to work for six months. They have that time to be with baby, to bond with baby, to not be exhausted because they have to go to work the next day. And so that's one of the problems we have in this country, is we are not allowing that time for breastfeeding and for safe sleep, and in terms of the education, October is safe sleep Awareness Month. There's a lot of information on our site and our social media. First candle.org where you can learn that information. But you know, it's not just who else is watching the baby. We know there's a lot of single dads out there. There are a lot of because of maternal mortality, dads raising their baby on their own, so we need to make sure that we're also getting the information to dads.

Nancy Barrow:

Yeah, that's that's vital, because I didn't even think about that. Why? And I guess this is where Connecticut Paid Leave comes in, right? Because Connecticut Paid Leave gives bonding leave up to 12 weeks for the parents, both mom and dad, if they're working and they're paying into this program, they should take advantage of the fact that they can take this time for bonding with their baby, and they can even maybe she takes the first three months, he takes the next three months, so then You have six months with that child, right? And so I do think that Connecticut Paid Leave can fill in the gaps there, and especially when you have exhausted parents, you're right, they're going to fall asleep with the baby on them. So how important are programs like this to the people that you serve and help?

Alison Jacobson:

Well, it's really interesting. I just came back from a conference in Atlanta, and they were talking about paid leave, and they had a focus group with dads who said is critical for them, because they want that time bonding with their baby. They feel like mom has more time bonding, and they want that, and they've. Known that it is so important, even as the child gets older, that that initial bonding time was in place. And so, you know, again, the same thing with breastfeeding. Breastfeeding reduces the risk of SIDS by 50% now I know not everybody can breastfeed, not everybody chooses to, but if they do, we see such a decline when mom goes back to work, because many people don't know it's the law to have a place for mom to breastfeed. But even if so, we see that drop off in breastfeeding when mom goes back to work. And we know that breast milk and breastfeeding is such a critical health component for mom and baby, yeah.

Nancy Barrow:

And they do say, when the latching is there, there's a huge bond that happens if you can, you know, and if you can and you pump, that's that is as significant as well. Yes. So what would you tell people, you know, when there's a loss that is so big, like that people don't know what to say, like family members friends, you don't know what to say to that parent, or parents who have lost a child this way, what is some advice you can give people about how they should talk to them? What should they say? How can they help them? What should they say to them in this kind of terrible loss?

Alison Jacobson:

Well, again, there is a problem in this country where we don't understand grief. And you, I'm sure you've heard about the stages of grief, but the Stages of Grief were never meant to be linear. They're circular. So there are days when you're denying it, then there's days when you're angry, and then there's days when you're bargaining, and then you go back to denying it. And so I think, unfortunately, there is this thought in our country where it's like, well, it's been a year. You should be you should be over it by now. Why are you still grieving? And it's a process. It's a process that really goes on for so long. The most important thing I will tell anybody who has a friend or a family member who's experienced a loss, whether it's miscarriage, stillbirth or an infant, families want to talk about their baby, ask them their baby's name, ask them to talk about it, because the last thing we want to do is think that people have forgotten about our baby. Our baby stays with us forever, and we never want to think our baby's forgotten. So too often, people are afraid to talk about it for fear of upsetting the person. Trust me, you can't upset us more than we already are, and the fact that somebody is caring enough to ask about our child means so much to us and the platitudes of it was God's will all of that, keep that aside. Just listen. Just listen. Give that family member the opportunity to talk, and it's okay to cry, it's okay to hug, it's okay to say, Hey, I'm just coming by to sit with you today. It's those little things that make such a difference.

Nancy Barrow:

Yeah, and, and I think mental health, right? So if you are depressed or you're full of anxiety, those are serious health conditions, according to Connecticut, paid leave, and they do give up to 12 weeks of income replacement. So you can take some time to get treatment. And there's, it's, it's hard to ask for help, but you know, there are therapists who can really help. Did you try to do that in in your grief.

Alison Jacobson:

So I went to one group, and while it was a wonderful group, it was for parents who'd lost their child. And as I said, it's a different loss when it's a 16 year old versus an infant. So for me, I That's why I reached out to first can, because it was specifically for SIDS and stillbirth and I felt like I was around my community. And I think that's so important to have be able to talk about something. We always say it's the club that no one wants to belong to. But once you're part of the club, we're all there for you. And so as I said, I really encourage people to check out first candle.org for those bereavement support services. Additionally, we have a gentleman on our board. He lost his baby back in 2018 and with two other dads, he started a podcast two years ago, guys and brief. It is the only podcast in North America for men dealing with infant loss, and it's just a fabulous resource, because the grief process for for men looks very different than women.

Nancy Barrow:

What is it? So tell me what the differences are. Can you tell me a few differences for dads who might be listening?

Alison Jacobson:

Yeah, you know, for. Women, usually that grief is looking back and what's missing for dads, it what it's what would have been looking forward, missing all the things that would have been we often have dads call our grief line, and they're whispering outside because they don't want their partner to know. They call because they feel like they need to be stronger. They feel like they can't show it. And men tend to express their grief more physically. They'll play basketball, they'll run they'll do things like that. They don't talk through their feelings. They act through their feelings. And that's very isolating for women who are trying to have those conversations. The other thing is, men want to fix it. You can't fix grief.No, you can only go through grief. And so understanding that your partner is grieving different than you is really important to give each other that safe space to grieve in the same way or to grieve in their own way.

Nancy Barrow:

That's interesting that they started the podcast. Yeah, you know, and you don't really think of the differences in how each parent might be grieving, and to know that is empowering in a way.

Alison Jacobson:

Yeah it's also racially. Black women historically aren't allowed to grieve, first of all, for so many black women, they have they they're just worried about their children not dying of gunshots. They're so busy caring for the entire family, they're not allowed to grieve. They don't have the time to grieve. And there is the impression of the strong black woman who doesn't breathe. And so whenever we're speaking in a group with black women. We always ask them to say their baby's name, and we hold space for them to really be able to grieve. It's not easy. It's not easy, and there's not, you know, a lot of access to mental health care there, either, and so 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 taken care of.

Nancy Barrow:

Yeah, you know, what are some of the resources available, and who can parents get in touch with to find out more?

Alison Jacobson:

So to find out more, as I said, you can go to firstandle.org. We have a tab for bereavement support, we have a tab for community outreach that talks about all our programs in the community and how you can get involved. There is certainly the donate button, because we are a nonprofit, and all of our focus is on supporting the community with products they need as well, swaddles, pacifiers, all of that. So that is the best way to get involved. You can find us on Instagram, First Candle and also on Facebook.

Nancy Barrow:

It SIDS awareness and safe sleeping month. And what would you like people to take away from this podcast?

Alison Jacobson:

I think two things from the education side of Safe Sleep awareness, it is never too soon to start talking and getting educated about safe sleep. Babysitters need to understand about this. Grandparents need to understand about this. You know, in high schools, the first person sometimes that knows somebody is pregnant, is that school nurse, and so it's critical that everybody understand about the Safe Sleep guidelines and safe sleep practices. But also October 15 is pregnancy and infant loss Remembrance Day. And all around the world, candles are lit on October 15 to remember all our angels who are gone too soon. And so if you know somebody who has experienced a stillbirth, a miscarriage or an infant loss, just say to them that day, hey, I'm thinking of you, because it really means so much to us to know that other people are thinking about our babies as well.

Nancy Barrow:

Any last thoughts about how Connecticut Paid Leave can help? You know, even if you're a caregiver, like we have caregiver leave, right? So, and our caregiver leave has a broader definition of family, so it doesn't have to be blood related. It can be by affinity, which could be a neighbor, your best friend and aunt that might be taking care of a parent who has had this terrible loss, especially a single mom or a single dad?

Alison Jacobson:

Yeah, yeah. It's it's so important to take the time available to you when you have a new baby, because you've got to take care of yourself and your partner. We're all exhausted. Take that time for yourself, because you need it. You need it for yourself, and you need it for your baby, and if you have experienced that loss again, take that time. Grief doesn't go away. It does get better, I promise you, and I'm here for hope. Um. But take that time, because you may think you're okay, but it'll come right back at you when you least expect it.

Nancy Barrow:

And what would you like us to know about Connor?

Alison Jacobson:

Oh my gosh, my perfect little baby, Connor. Connor made me who I am today. Connor impacted more people around this world than I ever knew he would. And every day, when I talk to another parent who's lost a baby, I say a little prayer to Connor, saying, Please give me the right words. And whenever I'm educating families, I can see my little angel over me saying, right on, mom.

Nancy Barrow:

That's so sweet. Any last thoughts you would like to share with our audience.

Alison Jacobson:

Please, please, please, understand the safest thing you can do is have a separate space for your baby to sleep in your room. Keep all blankets, pillows, stuffed animals away from your baby, because they can kill your baby.

Nancy Barrow:

I want to thank my guest, Allison Jacobson, the CEO of First Candle, which is a national nonprofit addressing sudden, unexpected infant death. Thank you so much for being on The Paid Leave Podcast. It was a real pleasure talking to you.

Alison Jacobson:

Thank you so much for having me and for what you're doing.

Nancy Barrow:

For information about First Candle, please go to first candle.org And for information or to apply for benefits, please go to ctpaileave.org This has been another edition of The Paid Leave Podcast. Please like and subscribe so you'll be notified about new podcasts that become available. Connecticut Paid Leave is a public act with a personal purpose. I'm Nancy Barrow, and thanks for listening.

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