Episode 111 – A Candid Discussion on SIDS with First Candle CEO Alison Jacobson

Disclaimer: Transcripts were generated automatically and may contain inaccuracies and errors.

Welcome to the kids sleep show, where we help tired parents from around the world to get their children to fall asleep independently, sleep through the night and build healthy sleep habits for Life. I’m your host, Courtney Zentz. Now let’s sleep together. All right, everyone, thank you so much for joining. My name is Courtney Zentz, the founder of tiny transitioned, and I’m joined today by Allison Jacobson, the CEO of first candle, who’s here to talk to us all about not only her story on the loss of her son, but also to talk about safe sleep and why it’s important. And during safe sleep Awareness Month, which is what we’re doing right now, as we’re recording this in October. We’re going to talk today very candidly about safe sleep, why it’s important and some things that parents really need to pay attention to. So I want to welcome Allison and allow her the ability to properly introduce herself. So thank you so much for joining me today.

Courtney, thank you so much for having me. What I think it’s important to start out knowing is it’s not just safe sleep Awareness Month, but it’s also pregnancy and infant loss Awareness Week, which is October the week of October 15. And well there are 3600 deaths every year from sleep related infant deaths, there’s so many more there’s 27,000, from stillbirth. And so I will guarantee that everybody listening to this today know someone who has experienced a loss because a loss doesn’t just affect that family and affects an entire community effects the doctors. So thank you so much for having me and talking about this. As you said, I am the CEO of first candle my son Connor died in 1997. I am not the founder of first candle first candles been around for 40 years. But when my son Connor died in 1997, I took a seat on the board of directors, I stayed for six years went on to do other things have three more wonderful children. But then back in 2017, I returned to first candle as CEO and it felt like coming home, it felt like that last puzzle piece. And it’s true, this is my job. But this is also my mission because I want to see every baby get to their first birthday, and that hence is the name first candle.

And I think with the work that you do and your own personal experiences, it’s such a hard conversation, right sometimes to have. And I think, for me, I do know personally, people who have had babies that they’ve lost for a variety of reasons and that experience I’ve never personally been through. And I also think sometimes you go, Oh, that won’t happen to me. Right. And, and it can and it it does, and it did for you. And I think there’s a seriousness about this conversation and this particular episode that we’re doing, because I want people to realize the conversations aren’t always happening. And as parents as somebody who was postpartum and frankly, probably postpartum, depressed and having anxiety, I didn’t want to talk to the doctor about how I was feeling or that, you know, I just got off a conversation with somebody where when my first son was born, he liked the lovey, and I had a very safe sleep situation. But when he was first born, we would he would fall asleep at the lobby. And then as soon as he was asleep, we would reach in the crib and pull it out. And you know, now I look back 10 years ago, and we’ll go What the heck was I thinking like, for those 15 minutes that he was falling asleep like he could have suffocated, but I didn’t know any better. You know what I mean?

You didn’t know any better. I mean, there’s a lot of information. And you know, just to give a little bit of a background, right, the back to sleep campaign started in the late 90s. And because of the back to sleep campaign, we saw a 50% reduction in the rate of SIDS. And that was that was great. But come into the late 2000s 2009 2010, all of a sudden, that plateau. And we didn’t see the deaths go down. And that’s when we started realizing it’s not just about back to sleep, there’s so many other things to consider. And that’s when the Safe to Sleep campaign started with nothing in that baby’s environment. No pillows, no blankets, no stuffed animals, no fluffy bumpers, and flat and firm with that baby on their back. But I want to go back a moment because when my son died, it was really before the internet, right? And so I had that thick book, What to Expect When You’re Expecting, and there was a small chapter on SIDS. And to your point, we don’t want to think about it. I skipped right through that. I said, Oh, that’s never going to happen to me. I don’t have to read about that. And so it’s not an easy topic to talk about. But I do want to talk about it because people need to know knowledge is power, right? So And I’ll never forget when Connor died. We had a memorial service and at that time I was working at a PR firm and And one of the women working with me was, I think seven months pregnant when Connor died, and the look of fear in her face every time she saw me, and the look of fear, every time someone came to greet me at the memorial service, because they realized I looked like that. And if it could happen to me, it could happen to that. And that’s why it’s so important. That’s why I love doing this because people need to see I could be them.

And I think it brings a conversation around kind of these two topics, right? You have sudden, unexplained infant death. And then you have SIDS, right? Sudden Infant Death Syndrome. But then you also have accidental death, right? Baby was on the couch with a parent and their arm got nestled and baby suffocated, right like, and the way you categorize, the end result is still the same. You have a child who is no longer with you,

right. And so just to clarify and not get too technical, so it’s actually sudden, unexpected infant death that’s SUID. Underneath the SUID category, you have SIDS, you have that accidental suffocation and strangulation in bed ASSP and then you have unknown and the unknown could just be now I’m not going to get too technical. And unfortunately, sometimes SIDS is mislabeled as ASSP. Sometimes the other way around at first candle, we just talked about it as sleep related infant death, because ASSP gives the assumption that it would only happen in bed, and that’s not true. Like you said, it could happen. You know, we know many families. In fact, it was just a tragic story of a dad, he was working late. He just wanted to be with his baby. Mom had all the information about safe sleep, she followed everything. They were brochures, dad knew but didn’t really know. And he was tired. He just came home and wanted to hold his baby girl. So he picked her up was holding her on the couch to watch the 11 O’Clock News, fell asleep and she died on his chest. And so I want everybody to understand it’s not just in bed, it can happen anywhere. And since true, SIDS is still unpreventable and unpredictable, but there are at least 1100 deaths every year from accidental suffocation and strangulation. That’s 1100 babies, we can say that can be prevented. And the vast majority of those are when baby is in bed with mom or dad in an adult bed.

And I mean, talk about some of the work that first candle does to educate new parents and to help support the parents who have had a loss or bereavement. You know, I know it spans both sides of the aisle. You know, the education right now this month, there’s a big push for it. But I know that every month it’s a topic that’s needed. And that should be talked about. And, you know, I think it starts at the doctor’s I mean, I left the hospital and they were like, Is the baby strapped in good. Alright, goodbye. It’s like wait, what? What am I supposed to do now? Right?

I’ve got this. You know what, exactly. So you’re right. We have two pillars, we have education, and we have bereavement support. And with the education we have two big programs. One is called Straight Talk for infant safe sleep, and that is for doctors, nurses, hospitals, doulas, anybody that is providing care to not just understand what the Safe Sleep guidelines are, but the whys behind them. Because we are all educated women. Explain to us why you expect us to do something, or else we’re not going to listen. So it’s the whys behind it. And it’s also the implicit bias that many health care providers have. I will never forget when my third baby was born in 2002. And at a very wealthy hospital, Greenwich, Connecticut, and the nurses brought her in and she was on her side. And by then I was an advocate. And I said to the attending, pediatrician, that baby, she needs to be on her back. And he said to me, please tell the nurses that because they’ve been doing this forever, and they will listen to me. And so there’s a lot of education that needs to be done because there is a bias out there from nurses that they know everything from before. And also there is a bias if they see a mom come in who’s on her second third baby, they’ll think I don’t need to talk to her about safe sleep she knows already. And that’s not necessarily the case. So we really work on that. We also do programs called Let’s Talk community chats we also saw especially during COVID mom couldn’t get into the pediatrician. She didn’t have time, and if she could get in she couldn’t bring her partner or her spouse or her grandmother, all these other people that are caring for your baby that need this information who may or may not be getting it back from mom So we started programs where we’re training dads, grandparents, as well as doulas and lactation consultants in the community who literally go where parents congregate naturally, whether it’s a retailer, whether it’s a community center, a church, where they know they can get information any month at the same time, and it’s not just handing a brochure, it is one on one conversations, because every situation is different. And we can’t just give Pat information, we need to have those conversations to see my mom is struggling, is she having problems breastfeeding? Is she having problems getting her baby to sleep? And what choices is she making because of that, and let’s offer you solutions, safer solutions.

So important when I had my son right before I was a sleep consultant, I found so much sanity, frankly, in driving once a week to at the time, it was Bryn Mawr hospital, right? It’s still there. But you know, they did in person, lactation groups, and I could get a weighted feed before I was a lactation counselor. And I could you know, I could understand how baby was transferring. But frankly, I got to talk to another human, you know, but I also got some education, like I met a mom that might be a little more experienced, I met a nurse who could answer some questions about, you know, something happening and people want community. I think they want community, especially now like I work at home in this blue office. And that’s great. But I only talk to people on the computer all day, you know, and I think people are starved for that knowledge. But it’s also sometimes a life or death type of knowledge situation when you get 30 seconds at the OBGYN or to see the pediatrician when they’re seeing 70 kids that hour. Like, they don’t have time to sit and talk with you about it. And I’ve sure as heck, I’m checking off everything like yeah, I got it. I got it. I’m good. I’m good. Thanks. Bye. You know, they’re not they’re not having engaging conversations. And I think that’s a deficiency, you know. So I definitely think that education piece is missing out there. We do a lot of work at Tiny transitions with expecting parents, right. And one of the girls on my team Aaron flourish, specifically does an expecting parents coaching session, talk about safe sleep talks about a week Windows talks about intake from the breast or bottle, like just common things that like parents don’t know, coming into a hospital to have a baby. And then they come home and they have the perfect nursery set up and they’re like, What do I do with this thing, right?

You don’t know what you don’t know. And you don’t know it until you’re in it. And you brought up a very good point, because it’s not enough to get this information. Once the baby’s born. Really, it needs to start as soon as you know you’re pregnant. Because I mean, for everybody out there who had a baby. I don’t remember what they told me in the hospital. I was like, exhausted and you know, my hormones were raging, you don’t remember. And I think one of the most tragic cases we had this couple and he’s actually now on our board of directors. Beautiful couple, they lost their second baby, she would fell asleep nursing in bed, and her six week old died. And it was traumatic. It was heart wrenching. And the social worker who came over to talk to them after the baby died, the first thing she said to them was, well, didn’t you read the brochure you were given in the hospital. That was it. Oh my gosh. And so that’s why we are so adamant. And I’m really excited to announce that today, we just launched a new area on our website, safer sleep Resource Center. And you can go to our website and click at the top of it. And what you will find there is downloadable resources, you will find support services nationally, but you also have an area where you can ask the expert. So we have Q and A’s. But if you have a lactation question, if you have a sleep question, there’s an area you can go and ask those questions. And we will get back to you. So I’m super excited about that. We also have an area and this has become very important to me, too, is the proper use of products. And we know that the safer sleep for act for babies came out where it’s saying what you know, not using inclined sleepers. But again, not everybody understands that. And now the Consumer Product Safety Commission has information out there, it can definitely be confusing. So we have an area to talk about how to use products safely for sleep and how to use products safely for those awake time supervised awake times. And it’s really important for parents to understand the difference, right?

Yeah, no, absolutely. And it’s, it’s, I would say an ever changing market, right? Like what you could do three weeks ago might not be the same today and how do you keep up on all of that? Right? So I’m excited to certainly check that out today and see as well for you know, the consultants on my team. I I have 12 consultants all over the country. And we are a safe sleep company. You know, we try to provide science backed education around St coaching and also safe sleep, because we believe in the message behind that, right, which is, you don’t want your baby to die. It’s as simple as that, you know, and what you can do to protect a child from you know, exposure to cigarettes, somebody might not correlate that that increases your risk of SIDS, right, or using the wrong type of swaddler product. You know, I used to kind of quiver when I think of kids coming home from the hospital with those blue and pink blanket. And they’re swaddled but you know, it was a revelation I had driving a couple of weeks ago, because I had seen you know, the statics Shutterstock photo that every sleep consultant uses on our website, and it’s like the newborn in the blue and pink blanket. And I’m like, that is not safe sleep, because I’m very conscious of the pictures on my website to make sure. And I was thinking about the picture, for some reason it popped in my head. And I was like, that’s not safe at all. Because those swallow blankets are terrible. No new parent knows how to do a swallow properly. And that thing could come off on night one or night seven, if you’re still using it, you know, and I was like, we really shouldn’t be sending kids home and that every kid should be sent home in either a proper safe swaddle or with nothing but knowing that most parents will end up swaddling, right, we should send parents home with a toolkit that repairs them. You know, I tried to get into the local hospital here. Five years ago, with a very detailed safe sleep newborn ebook, I give it away. It’s like 30 pages, it talks all about awake windows, and you know, your stages of sleep and what’s happening with your baby. Like I give a lot of information away for free to new parents, because I want them to start on the right foot. And they were like we’re not interested in like, I just delivered a baby at your hospital. And all you talked about was jamming nursing down my throat, which is great, because I was able to nurse for eight or nine months, but like not every parent can. And by the way, there’s other important things besides nursing, you know. And they were not interested at all to even talk to me for a second about it. They’re like parents get the education in the courses. I’m like, really? How many people join your courses? Because I was never even offered them?

Yeah, it’s it’s very frustrating. And we found that in a lot of focus groups, and we had focus groups around the country two years ago about breastfeeding, and safe sleep. And what we found is if there is a question between making breastfeeding easier versus safe, sleep, breastfeeding Trumps. And that’s because that’s what they’ve heard about. And, you know, what I want everybody to understand is, this is not a mutually exclusive, right, that breastfeeding is absolutely known to reduce the risk of SIDS. And we want to encourage breastfeeding. However, what we’re saying is, and I’m sure you say this, you know, have your partner support you. So once you’re done breastfeeding, he or she takes that baby away, or you’ve got an alarm clock set, or whatever it is, just once you’re done, put the baby back in the safe sleep area, which is in your room, just not in your bed. And you know, I liken it to the fact of if you’re in a car, right and you’ve got your baby in the car seat, you’ll take your baby out of the car seat to nurse but then you’re gonna put the baby back in the car seat, because that’s the safe place for a baby. And I don’t think parents understand there are no sleep standards, safety standards for an adult bed for babies. There’s not. So an adult bed is made for adults. Other areas are made for babies. It’s that simple.

Yeah. Well, and it brings up a great point even about driving. So a friend I went to high school with I haven’t talked to him in some years. But him and his wife were driving. They had a newborn, the baby was hungry. So she strapped the unstrapped the baby from the car seat was nursing the baby, they got in a car accident and the baby died. Because she was as they were driving as they were driving. She was nursing in the front seat and they live, the baby died, it was thrown about 50 feet from the car. And it was heartbreaking. Like I’ve known him for 20 years. I haven’t talked to him in a while we were friends in high school, you know, but like, you got that story and you’re just like, oh my gosh, like I’m so sorry. Like, what do you say to that? Like, but you don’t know, like, you made me drive in and you’re like, I gotta feed them but we got to drive and we’re stuck in traffic or we’re on the highway or set you know what I mean? Like, that’s not safe, but like, did I mean it happened? You know what, it’s, it can happen to you. And I think that’s the important thing is like safety sleep. And to your point safe sleep and breastfeeding safe sleep and formula. They’re not like people think I can’t sleep train, I’m gonna lose the nursing relationship. No, you can nurse just don’t do it to sleep because that’s a habit. Like you can have a very successful nursing relationship that frankly, is usually better because your baby’s rested and they sleep well so they eat better. Right? So actually, my nursing families do better because the kids are sleeping well but people think it’s like this mutually exclusively here. Have one if you want the other and it’s like, you can put the baby on the breast like I always got out of bed and sat in the glider and would nurse and then I would put the baby back I would pump if I you know, I was like a milk psycho with my first son. I was like pumping every chance I could, the whole Pennsylvania Turnpike probably saw my boobs at this point. But I would nurse and then I would put them back in the crib, and then I would go back to bed. And it was like, I took the middleman out which was nursing bed because I would fall asleep and what if I dropped baby, you know, not so much suffocation, but like, what if you also drop them? Right? feet off the bed. So it’s, you know, I mean, there’s so many situations with just safe sleep and unsafe sleep. And I think a lot of parents, even the the padded bumpers, you see them all over Hollywood with like these fancy nurseries. And I’m like, you’re not setting a good example for the people that look up to you around safe sleep guidelines, you know, and things that you’re doing in the space with the pillows, like while they’re in the staging picture, right? It doesn’t set a good tone for the fact that there should be nothing in that crib, but a baby and an actress, you know,

and you bring up a really good point because and that’s why we have a program called Safe Sleep guardians that any company can be a part of, it’s free. But it’s just any company blogger influencer promises only to show pictures of babies in safe sleep environments. And that’s all it is. Because you’re right, a picture’s worth 100 words, and we hear so often, you know, online, oh, I just did that to stage. That’s not the way it is. But that’s what your fans see. That’s what your audience sees. You know, the pictures of, you know, Dad huddled up next to the baby, how cute dad is. It’s just not safe. And you know, as long as you know, as long as mom or dad or caregiver are awake, it’s fine. But when they’re asleep, put baby in a safe sleep environment.

So from your perspective, right, obviously, with your personal and business experience. Now at first candle, what would you tell a new parent who’s listening to this? And maybe they are pregnant? And they’re going, oh, gosh, like I’m a little scared right now. Like, what? What are my options? What should I do? You know, obviously, we’re going to be sharing a whole bunch of stuff around safe sleep this month. So certainly the tiny transitions blog and podcasts and stuff, we try to promote, you know, safe sleep as much as we can. But we have the expert here right now, like, what do parents do?

I think the most important things if nothing else, is on their back, firm and flat with nothing in the environment, a wearable blanket, a wearable swaddle and in the same room with mom and dad, but not the same bet that it’s that simple. And not just for bedtime, but naptime as well. And when I sit, you know, people say you know, everybody has a different idea of what firm and flat means. Firm means if you push your hand down onto that mattress and lift it up, if there’s an indentation, that mattress is not firm, it has to be firm. And look, I get it. Everybody thinks, oh, it looks so cold and sterile. That’s what we think as adults. That’s not what a baby thinks. A baby’s fine. And that’s where we get into this ridiculous and a lot of it comes from marketing. Right. That’s what we were sold. Yeah. So that is the most important thing. And, you know, you can get more information at first candle.org There’s tons of resources there. There’s always somebody to answer questions. And you know, I’m just so grateful that you know, your site and your podcast exists to give this information to get the message out.

Well, I’m excited and I know you’re doing so much amazing stuff in the world. I know you just had a book release. Do you want to take a second and chat about that?

I did. Yeah. So in addition to my role as CEO and first candle, I am a coach for women in midlife who are looking to get past fear and self doubt and remember who they were before they took on all those roles of mom and caregiver and spouse and all of that, and really stepped back into their power and live their dreams. And I just launched a book yesterday, daily inspirations for midlife, women guide confidence, abundance, success and joy. And you can find it on Amazon paperback and Kindle and it’s not just for midlife women, it’s quotes from me it’s quotes from other inspirational women, just to wake up and feel that power and and hear that in your mind. And it makes so much of a difference because so many of us have self doubt, and fear. And we need to lift each other up as women, because we are the ones that are going to make a difference in this world right now.

Yeah, absolutely. I’m so excited. I’m gonna order it today. And I look forward to hopefully having some others do that as well. I’ll be sure to put the link for that in the show notes as well. So if you can leave our guests with anything, certainly the resources that just launched on first candle.org We’re gonna put all the links to everything you’ve already talked about. You know, one final piece of advice for new current expecting or parents of multiples, maybe expecting another one. What’s one thing you would tell them? Trust your judgment

and don’t buy into peer pressure? Do what you know is right for your baby. Eat, and practice safe sleep.

Thank you so much for joining me today. I really appreciate your time. Allison, it’s always a pleasure to chat with you.

Well, thanks for having me. I

really appreciate it. Hold on one more thing before you go. As a valued listener of the kids sleep show, I want to help you build a great sleeper not just in the times you’re listening to the show, but all day every day, every week of the year. I have a new Facebook group called slumber made simple. It’s a place to gather with other parents looking for sleep support, laughs and the latest in sleep research, to build a family that is rested and at their best day in and day out. If you want to be part of the community where you can get free sleep support, weekly training sessions, unbelievable content and so much more. Head on over to tiny transitions.com forward slash community that’s tiny transition stuff comm forward slash community or head over to Facebook and search slumber Made Simple. drop me a note and let me know when you join. I can’t wait to see you there.