00:02:28.780There's a strange and sometimes painful role that social media plays here
00:02:32.960when you're trying to keep your child's memory alive for everyone who did and didn't know them.
00:02:38.260This episode is heartbreaking, but I promise it is also full of so much love.
00:02:45.040Florencia is very clear that she does not want to terrify parents, and neither do I.
00:02:50.380She just wants people to know that this exists, and she wants families who've lived through it to feel less alone.
00:02:56.260I think that sharing stories, even the hard ones, and maybe especially the hard ones, is incredibly important.
00:03:03.940And I'm just really grateful that Florencia chose to share hers with me.
00:03:07.800so my name is Florencia Segura I'm a pediatrician mom of four and the reason I'm on is because our
00:03:22.340third child about a year ago I am a year and a half ago Rosie passed away on May 20th May 20th
00:03:29.980we think May 20th, but her official date is May 21st, 2024, in her sleep. And we learned that
00:03:37.420she was one of 433 children that died from this category of death called SGDC. Rosie was this
00:03:46.800incredible, beautiful child. She had these big, beautiful blue eyes, wispy, light brown hair,0.58
00:03:52.940this scrunchy smile, a true miracle. She loved being outside like all toddlers do. And she was
00:04:00.800just such a special part of our family. So nothing could have prepared us for this moment. And one of
00:04:07.860the hardest parts about this was grieving a child so suddenly, but also not having anyone really
00:04:16.580know about SUDC, even within the pediatric community. I've had a couple people reach out
00:04:22.440to on Instagram that they knew, like I had heard of someone that had happened to this. But unless
00:04:28.120you know someone that this has happened to, no one really knows about this. And everyone knows
00:04:32.640about SIDS, also known as SUID, and other medical conditions. So that's sort of why we're on.
00:04:39.360We have been social media friends for, you know, years now. I watched your family grow.
00:04:44.780we had babies around the same time what was rosie's what was rosie's birthday november 8th
00:04:51.9402022 right right exactly yeah so i mean you we i was a couple i think i feel like i was two months
00:04:59.960two months before like a month before me a month before me right and so
00:05:05.600we're thirds you know right both our thirds both our thirds and so i was watching your growing
00:05:12.540family. And then all of a sudden, I saw this tragedy happen to you on Instagram. And I had
00:05:22.560never, I had never even thought that this was a possibility. You're a doctor, you are also a
00:05:28.400pediatrician. And yet you didn't know that much about it. For our audience, can you explain what
00:05:33.940this is yeah um so i agree yeah that that i had heard about it only because of a podcast and that's
00:05:42.680why i really think podcasts are an incredible thank you joe for having me on but such an
00:05:47.520incredible medium because a lot of us are driving and i was actually driving to work and i have a
00:05:53.640list of podcasts i listened to and this one was on sudden unexplained death and children and i
00:05:58.260remember looking at the podcast title and being like, that's very sad, but also very interesting
00:06:06.040because I've never heard of that. And if it wasn't because of that one podcast, I would have been
00:06:11.100in a much kind of, I would say, worse situation than I was because when the medical examiner
00:06:16.340called us the next day that they couldn't find anything on the autopsy, and obviously she would
00:06:20.360need further testing, et cetera, I had at least heard of this. And so that was incredibly helpful.
00:06:26.280So first of all, thank you again for having me on because there's so much awareness for breast cancer awareness, which is super important, and colon cancer awareness.
00:06:34.240But for SDDC especially, there really is no awareness.
00:06:37.540So any kind of way through podcasts or a social media post, an article, is just a greater way to spread awareness about this.
00:06:48.220But basically, sudden unexplained death in childhood, also known as sudden unexpected death in childhood, is a category of death.
00:06:55.600It's not a diagnosis because we feel like there might be several types of things that
00:07:01.100lie under the sort of like under the umbrella, but it's a sudden and unexpected, unexplained
00:07:23.800And the investigation includes a thorough case investigation, a review of the clinical history, circumstances of death and autopsy and ancillary testing.
00:07:34.600And most of these children, 60 percent of these children are actually toddlers, one to four, which is exactly rosy within that.
00:07:45.160And you have chosen to be very public about this, to spread awareness.
00:07:50.340this is one of the good things that social media can do that you can share a story but it's also
00:07:59.440very hard i mean because you've had to in a way publicly grieve what have been the downsides and
00:08:07.760the upsides to that yeah 100 and i i feel mixed about social media but for this i felt like i
00:08:15.360could leverage the fact that i'm a pediatrician for a lot of families that don't have a voice
00:08:19.540I have an SUDC mom group in Northern Virginia. These are incredible moms. And we talk about things that people don't even think about in terms of like raising kids and having lost a child. But I felt like it was important to be public about this.0.99
00:08:34.820And I'm usually pretty like, you know, in terms of before this happened, I was sort of like it was very much more professional, like let's talk about vaccines or let's talk about this or the RSV seasons here.
00:08:46.580Very little about my personal life. But this is sort of been this was a little bit of a change in that I felt like it was very necessary to talk about Rosie and talk about and have a voice in this.
00:08:58.220And, you know, our kids don't that passed away, don't have a voice and our families don't have a voice.
00:09:03.260So in terms of the upsides, a lot of community, a lot of support, I've been able to connect with other families that have lost children like this, you know, that's all about, as you know, hashtags, tagging, etc. And I actually found my Northern Virginia, like mom, SUDC mom group, through social media and through the SUDC Foundation.
00:09:23.100I think the downsides would be, you know, I mean, people are going to have opinions.
00:09:27.000We ended up having, and we'll talk a little bit about this, a rainbow baby.
00:09:31.560And we found out we were pregnant with Lucy a couple months after.
00:09:34.760So I'm sure there were people that were like, that's too soon.
00:11:39.600Right. And I mean, I'll be honest, there were comments that, you know, as a pediatrician,
00:11:43.420people know that I'm very pro-vaccine and there were comments that, you know, it was the vaccines
00:11:48.100And it was not the vaccines. You know, she was 18 months. She didn't have her last set of vaccines three months before. So there was absolutely no correlation in time with vaccines. So I will be very, very transparent with that.
00:12:04.340But also the fact that someone even said that. I mean, that is just I've been spending a lot of time with friends over the past couple of weeks who have neurodivergent kids who are now feeling shitty and guilty all over again after they've really like worked through it because of this Tylenol declaration. Right.
00:12:29.100So now to come at a grieving parent and say, well, it's because she did because you gave them these vaccines, which we all know is ridiculous.0.97
00:12:37.520Yeah. I mean, for Rose, I I I bring during talks, I bring that exam.
00:12:42.020I bring her up all the time in terms of. There's just no time course, there's no there's no association.
00:12:48.600You know, you can't like we didn't have her. We actually she was due for her 18 month appointment.
00:12:52.820We never got to her 18 month appointment. So it was clearly not the vaccines.
00:12:56.620And, you know, these vaccine people will go after, I will tell you, families that lose children to SIDS or to SUID. And this is sort of what fuels this whole misinformation, this terror on vaccines, because this is a time period where children obviously are going to the doctors to get vaccines to prevent deaths.
00:13:16.600And so that's sort of another thing that's happening. But I do bring up Rosie's example. And when I do talks on this to other pediatricians, I will put up the immunization record and I will show. And to the public, there is no association. There were multiple months, more than three months where she didn't receive any vaccines.
00:13:36.900Right. But it's insane you have to do that because we live in a crazy world.
00:13:46.260And when we get back, I want to I just want to hear about more about who Rosie was.
00:13:52.180I want to talk a little bit about her.
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00:14:26.460okay we are back tell me about rosie yeah i talked a little bit about how i mean when i0.95
00:14:38.680describe her she's just it was the most easygoing baby and toddler uh she loved being outside like
00:14:45.100every toddler loves she loved her older siblings which i'm sure a lot of families with a third can
00:14:50.400relate to that she loves pop patrol that was one of her first words pop patrol uh because uh her
00:14:56.420big brother george loved pop patrol and she just wanted to kind of fit in with her older siblings
00:15:00.880and her her loss was just so deeply felt in our family and it still is she loved broccoli so
00:15:08.480anytime we have broccoli for dinner we always bring up that she loved broccoli what else she
00:15:15.320just had like this beautiful kind of this like toothy smile and loved unloading the dishes,0.85
00:15:22.540dirty dishes from the dishwasher. So she's just a very easygoing, full of life child who just
00:15:31.500loved hugging and loved her stuffies. And it was just so like loved caressing me and we were still
00:15:38.160nursing too. And there was a reason for that because, you know, for my two older ones, I wasn't,
00:15:43.040We stopped a lot earlier, but with her, it was the last thing we did before she passed away. So these children, I always remind families, and when I give talks, are extremely well-loved, very well taken care of.
00:15:57.960So how have you kept Rosie's memory alive for your other children? Especially, I mean, let's talk about the bigs first, and then your child who's never met her.
00:16:09.340Exactly. So, you know, it's interesting. I read a lot about child grief, the grieving process, how to best support children, siblings. This is sort of also part of what we do as pediatricians and sort of the way that we have come about and is supported by research is we bring her up.
00:16:29.680We it's not like it was in the like 40s or 50s where there is maybe a child that died from SIDS or from some vaccine preventable illness back then.
00:16:39.420And no one would talk about them. Right. We don't want that.
00:16:42.540We want our family or our kids and our family to remember her.
00:16:46.340We take birthdays and her death anniversary, her passing date very seriously.
00:16:52.060We hold space. We don't plan anything other than things about Rosie.
00:16:56.040and yeah like little things if we're eating broccoli or one of the words that she used to
00:17:00.920say like come up we like talk about her but we also don't try to we want our kids to live normal
00:17:07.280lives this is not their fault that this happened to our family we want um our kids to love living
00:17:13.700and have like a joie de vivre that she had and um have a relatively as normal childhood as possible
00:17:20.500um so we have pictures of her um all over our house just like we have pictures of our other
00:17:26.180kids we don't we try to have them equally spaced out um and like i said sort of like those special
00:17:31.380dates we hold space um for them and how i'm always curious too and let me know if this is too
00:17:38.600personal but how did it impact your marriage your relationship how did how did the two of you get
00:17:43.260through this together it's a great question very important so grieving uh and this sometimes will
00:17:50.280drive marriages apart is just because the grief process is so personal. There are some sort of
00:17:57.400like stoic grievers that just kind of are grieving and are extremely overwhelmed by everything that's
00:18:04.460happening, but they just have to keep going in their lives. And then there's some that just have
00:18:08.360to literally just take off of work for four or five months and just kind of be alone. And my
00:18:14.700husband and I grieved a little bit differently. So that was sort of something that was really tough.
00:18:19.180But the more we read about this, the more that we talk to people, we realize that this is not unique to our situation and that most marriages actually have to the partners actually just like one partner is more extroverted and the other one's more introverted.
00:18:35.840Yeah, I've done a lot of interviews with with couples who've lost kids for committed over the years.
00:18:41.500I mean, we've done that show for eight years, and I have seen it drive couples apart, and I think it's because we do all grieve differently.
00:18:54.620And we live in a weird space with grief these days.
00:18:58.480I mean, grief influencers are an actual thing on social media now.
00:19:07.880So it was interesting when I first lost Rosie, my social media feed.
00:19:12.600I mean, I took I had to take like one or, you know, a couple of weeks break from from even like being able to be on it as much.
00:19:19.100But you it was like all the ads and all of the accounts were on my feed.
00:19:25.820Right. So that I just find that it was helpful.
00:19:28.800But then it's also like that's all you're looking at.
00:19:31.020Right. So you feel understood because you see that people are other people understand what you're going through.
00:19:37.220But I also feel like in some ways it cannot be helpful because you are, I mean, that is the goal of life is to pick up the pieces and keep going. And I feel like with my kids, I want them to have a normal childhood and a normal life. And I know that Rosie would want us, I mean, she was like the happiest child and she would want us to laugh and to smile.
00:20:00.480And so I think grief influencers are very helpful, especially when you're in that early stage, that fog grief, where like, I remember going to the grocery store at six weeks for the first time after Rosie passed away because, you know, people were like, fine, thanks for us.
00:20:18.100And I, hey, you know, this is actually one of the most helpful things if you have a friend that's had a baby or, you know, has had some kind of very tragic thing happen to them or their family or is sick.
00:20:30.160I'm at the grocery store, name three things that you need, right? So fortunately, I didn't have to
00:20:35.020go into a single store for a long time. But when I finally went, I was still very much in a fog.
00:20:40.840And I remember wanting to wear a t-shirt and, you know, being like, my daughter just died a month
00:20:47.280ago. Please be gentle. Please give me a hug. It was just like a very surreal situation to try to
00:20:52.480be like in the middle of normal. And I think that that's another thing that people will say,
00:20:57.100It's sort of like everyone's life is continues to go on and yours feels like it's been stuck in this like this weird time capsule type of situation.
00:21:06.340So, yeah, so I think grief influencers are helpful, but also like for me, I know I don't want to get stuck in the grief.
00:21:15.340I mean, grief is love. And I always want I mean, I think about Rosie all the time, but I also feel like we need to keep moving forward with her, not moving on, but moving forward.
00:21:27.680what is the best thing people can say to you you and I did an interview a couple weeks ago for
00:21:34.320something totally unrelated I was interviewing you as a doctor for another podcast and I've got
00:21:40.160to say I was nervous getting on the interview with you because I'm like what do I say what do
00:21:44.920what is the best thing to say because I obviously know what happened through social media but I0.86
00:21:49.840didn't know and I just I just came on and I was like I heard about Rosie I'm so sorry it fucking
00:21:54.420sucks yeah i mean honestly that's perfect um i'm so sorry thank you for you know that's that's a
00:22:01.820very like i would say that that's a beautiful phrase to say i'm so sorry about rosie even
00:22:07.160naming her and uh giving our daughter a name and even just asking like i'm here and you know people
00:22:14.620will say there are no words and at first that kind of like got to me because i was like what
00:22:19.860mean there are no words you know but I mean there really are no words sometimes like what you can
00:22:24.680express and I think that you are trying to convey that like what I feel for you as another fellow
00:22:29.460human being and as a mom I can't say that and I'm here with you nowadays like we're about a year
00:22:37.360and a couple months out which is getting to be a crazy kind of milestone and that we're 16 months
00:22:45.820out and she's lived as she her life was 18 months so that's sort of like a big mile so that a lot
00:22:51.380of families that have lost children will like say that it's kind of crazy that you are getting to a
00:22:56.920point where you're going to live more time without her than she lived on earth right and so for some
00:23:02.300different families obviously that age varies but yeah that's that i would say and then now for
00:23:07.160what my point being now sort of sometimes it's helpful when people learn about rosie
00:23:13.660and they say I'm so sorry about your daughter and sometimes like I like having that invitation to
00:23:21.480talk about her like hey can you tell me about her or you know are you like are you good now or do
00:23:29.360you want to you know keep talking about what we were talking about because sometimes like on some
00:23:32.700days I'm like it's overwhelming and I don't necessarily want to talk about Rosie but some
00:23:38.320days I want to talk all day I want to talk about Rosie and I want to share about her so I think
00:23:42.120giving also that space for people to share or maybe not share because it kind of changes every
00:23:47.420day I mean I think I think how we feel about everything changes every day so I mean of course
00:23:55.280of course grief would as well let's take one more quick break and then when we get back I want you
00:23:59.580to talk to me a little bit about what as both a mother and as a doctor as a pediatrician as one
00:24:05.580of the pediatricians that I go to with questions all the time what do you want people to know about
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00:25:03.640Okay, we are back. What information do you wish was out there about this? And we don't call it a
00:25:09.700disease? What do we call a condition? What exactly do we call it? How do we name it?
00:25:14.840So it's a category of death. So it's not a diagnosis because we don't fully know exactly
00:25:19.120what's happening. But what we think is that it is related to febrile seizures. Now, we don't want
00:25:25.320to scare the public because 3% of toddlers will have febrile seizures, and those are pretty common
00:25:30.800in my clinic. But when we look through the research, 30% of children that have passed this
00:25:37.620way had had a history of febrile seizures. And what is a febrile seizure? A febrile seizure is
00:25:43.420a convulsion that is triggered by a fever, usually during the toddler years. So it's a provoked
00:25:48.960convulsion. And one of the things that I want to emphasize is that if you do find out or you know
00:25:57.380someone that this has happened to is getting in touch with the SDDC Foundation Research, the NYU
00:26:06.220program has the SUDC RRC and the Roberts program through Boston Children's have great research
00:26:11.120programs because not only can they support you, but basically the big, the, the, the point of
00:26:16.980this whole, um, I would say incredible podcast. And thank you for having me on is that this is
00:26:23.000really, there's really no awareness to this. So we can't figure out what's happening until we
00:26:27.480have more research. This is, there are really no NIH, there's no NIH money, especially now
00:26:32.760going to this um so a lot it's incredible injustice that the research that is happening
00:26:39.260in the space is all bereaved families um contributions and their communities um so when
00:26:46.660we did rosie's walk that is for research when we initially said to people please don't send us
00:26:52.540flowers send money to the roberts program for research because that is how we're going to
00:26:58.760figure out which kids are at risk and which kids need to be monitored. So I don't recommend everyone
00:27:04.880getting an outlet or a nanit because that will drive you crazy. But what we do need to find is
00:27:11.000figure out which kids are at risk so we can monitor those kids more closely at night.
00:27:15.720Right, right. And this this is a thing that does tend to happen at night, right? Kind of like kind
00:27:20.980of like SIDS. And I know that I'm asking really simple questions, but these are the things that
00:27:25.460I'm so curious about. Yeah. So median age is 22 months. Rosie was 18. So she's sort of like very
00:27:30.600close to that median age and 85% of children that pass away are in their sleep. And it's not
00:27:37.720surprising to me because this is when we're not monitoring them. I mean, you know, I mean, if
00:27:43.100they're having some kind of like agonal event or some kind of moment, we are sleeping. So we can't
00:27:48.780and, you know, by the time that children are toddlers, we're not really monitoring them
00:27:52.880overnight. You know, we had an audio monitor. We didn't have a video camera. Like she was our
00:27:57.500third child. And, you know, the AP recommends no monitoring devices. So I was, you know, she slept
00:28:03.260in her own bed. I mean, in her own crib, in her own room, we closed the door. So she went like
00:28:07.700the other kids wouldn't wake her up. She did have a little cold. But, you know, her autopsy didn't
00:28:13.000show any complications from the cold. So until we kind of figure out which kids are at risk through,
00:28:18.760you know, Rosie had full genomic sequencing through the Roberts program. She's also enrolled
00:28:22.700in the SUDC RRC program. And what is that? So these are two research programs, one through NYU
00:28:30.940and one through Harvard, through Boston Children's, that will literally take your child's case. And I
00:28:36.920don't want to be graphic about this, but we did send Rosie's brain to the research program. And
00:28:44.820also they did full genomic sequencing, sequenced our genome as well, and then looked at her brain
00:28:51.460because a lot of the, we think that it's sort of seizure related.
00:28:55.220And they did find some findings in like the hippocampus and the temporal lobe that suggests
00:28:59.140that she had a seizure that, and she was found face down.
00:29:02.500And so she couldn't get herself out of it.
00:29:04.420So what we're advocating is just awareness.
00:29:07.760So A, that people just, and moms just know about it.
00:29:11.060Not to, I mean, at this point, we can't ask anyone to change the way that they're living
00:30:41.660Ill-known, unidentified cause of death. So because there's no ICD-10 code, that's like sort of a category or a diagnosis, a diagnosis of death, it's a category of death. It's actually not listed in the CDC chart, which hinders research.
00:30:57.520So hopefully, actually, in the next year, all of the big researchers, Dr. Goldstein, they are hoping that there is an ICD-10 code, will be ICD-11 code in terms of this category of death.
00:31:13.180Why do you think it's categorized like that?
00:31:15.220I mean, that's just crazy speculation, but it's so interesting to me.
00:31:18.520Well, because we, I mean, this is sort of a relatively new, now that we've got the internet and people are, you know, the relatively new category of death in terms of, this has been happening for obviously years, but in terms of the SGDC category of death, I think it was about 2001 where it was sort of categorized as SGDC.
00:31:42.960So it really hasn't made it into the ICD classification system.
00:31:48.520That makes sense. That makes sense. Okay. We are going to close out this episode. Tell me what you want listeners to remember about Rosie. Just one line.
00:32:01.640her love and her laugh and our tagline for life right now is love like rosie
00:32:10.440so that's what she's calling us to do is to live life fully and I don't like that phrase like live
00:32:19.100every day like it's your last because then you don't end up doing anything good life but almost
00:32:23.320like live every day like it's your first and live with that wonder and that excitement and live like
00:32:29.380you're going to live until you're you know 90 95 years old and have all of these bold plans but
00:32:34.660just love everyone that really means a lot to you and let them know that you love them so that's
00:32:39.860sort of my my dad line i love that tell everyone where they can find more information about yes so
00:32:48.180my name is dr florencia segura and i have an instagram profile um on under that name and