Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
Kegan's Story
57 Plays1 year ago
In this episode we sit down with Dr. Terrell Hatzilias as she shares the story of the life and legacy of her son Kegan.
Dr. Hatzilias is a neuroscientist and medical writer. She is the proud mother of two children, her living daughter and stillborn son. Since the death of her son, Terrell has made stillbirth prevention and advocacy her passion. She has successfully lobbied SMFM to update pregnancy management guidelines for isolated single umbilical artery pregnancies, led a team of bereaved mother in passing legislation in Washington state allowing issuance of a Certificate of Birth Resulting in Stillbirth, and recently published her first book, titled Still His Mama, about stillbirth and grief.
Thank you Terrell, for sharing your story with us, it was an honor.
To purchase Still His Mama: click here.
You can connect with Dr. Hatzilias on Instagram here.
For more information on single umbilical artery: https://www.marchofdimes.org/find-support/topics/birth/umbilical-cord-conditions
Thank you for listening.
Recommended
Transcript
Introduction to Nicole and Desiree's Podcast
00:00:00
Speaker
Hi, I'm Nicole and I'm Desiree. We are both mothers who run a support group for perinatal loss. Through our group, we have met many wonderful families and have had the honor of hearing about and sometimes meeting their beautiful babies. We noticed that families feel relief when they can share openly and feel seen when they meet others who are telling similar stories. So we created this podcast as a space for families to share the stories of their babies.
00:00:23
Speaker
We want to honor and remember these children. We want to help you navigate your life after loss. And most importantly, we want each story to give you hope. So please join us as we share these stories of grief and love. Welcome to the Blindsided Podcast.
Dr. Hetzelius' Story and Advocacy
00:00:44
Speaker
Welcome to the Blindsided Podcast. We're your hosts, Nicole and Desiree. Today we are here with Dr. Terrell Hetzelius, a neuroscientist, medical writer, and lost mom who is from Washington state. She has lobbied for a change and stared out of care with the Society for Maternal Fetal Medicine and has most recently published a book called Still His Mama in which she shares about her son Keegan and provides a sense of companionship and understanding to readers experiencing a similar fate.
00:01:12
Speaker
Dr. Hadzilias, thank you so much for being here. Could you tell our listeners a little bit about yourself? Hi, thank you so much for having me. It's a huge honor to be here. As you mentioned, I'm a neuroscientist and medical writer. I'm a very data-driven person. And like many of your listeners, I'm also a lost parent. I have two children, my daughter Kira, who was born living in 2016 and is currently a happy, healthy second grader, and my son Keegan, who was still born at term in 2018.
00:01:38
Speaker
He was 38 and a half weeks long, so he'd be five if he had survived, and he would be entering kindergarten this fall. Since losing Keegan, I've become really involved with the childbirth advocacy field, and this really wasn't a field that I knew a ton about prior to 2018. The more I learn about, the more I see places where we can make a difference and help each other, either by preventing childbirth through researching the causes of babies dying, or by helping families who have endured childbirth to feel less alone and to feel validated in their grief.
00:02:07
Speaker
There are a couple of places where I've tried to intervene and help, one of them you already mentioned, which was lobbying SMFM or the Society for Internal Fuel Medicine to update some standards of pregnancy care, which I'll tell you more about later in the context of Keegan's pregnancy. And another big one was passing a law in Washington state, which our family calls Keegan's law, allowing issuance of a certificate of birth resulting in stillbirth. So mothers who give birth to stillborn babies can now request a birth certificate in Washington state.
00:02:33
Speaker
And I also just joined the board of directors for now you let me down to sleep, which for anyone who doesn't know is an amazing nonprofit that offers free professional portraiture of babies lost to stillbirth and neonatal death. And now of course I've written and published Still His Mama.
00:02:47
Speaker
with the hope of offering comfort to the bereaved and really further educating support systems on grieving stillbirth. So like many lost parents, after losing my baby, I just kind of threw myself into the stillbirth field and just trying to help as many grieving families. That's amazing.
00:03:04
Speaker
That's amazing that you've accomplished so much in just, you know, those few years that you've had. I mean, he would just be in kindergarten, so five years old, you know. But I do know an amazing photographer for now I lay me down to sleep.
00:03:19
Speaker
So I was, I had told Terrell before that I started this journey with Naile Me Down To Sleep when they first started in 2006, which is how I came to be a part of this community in a bigger way because I have never experienced a loss myself. But I just knew that there was more that we could do. So I'm really excited for you to be on the board of directors because I obviously believe in the work that Naile Me Down To Sleep is doing and how important it is for families.
Keegan's Story and Medical Insights
00:03:50
Speaker
Yeah, it's a really, really important organization. It's really the only way, the pictures that we have now, I lay me down to sleep, is the only way that our extended relatives got to meet Keegan. So we live in Washington now, but I'm originally from the East Coast and so is my husband. So we didn't have my grandparent or Keegan's grandparents, my parents here. We didn't have my sisters or Carl's brothers here. We didn't have any of our close
00:04:13
Speaker
family to meet Keegan, and none of them ever did get to see him after he was born. And so these pictures are literally the only way that they got to meet him. And so they're really just completely priceless to us. Yeah, absolutely. So can you tell us a little bit more about your pregnancy with Keegan and his birth? Yeah, of course. Keegan's pregnancy was entirely typical up to the 20-week anatomy scan. And honestly, being, you know, it was the second time I was pregnant because I already had had my daughter, I kind of was like,
00:04:42
Speaker
We've got this, you know, I know what to do. I know what to expect in this situation. And then we went into the 20 week anatomy scan and we found out that he is what is known as an isolated single umbilical artery baby, which I did not know that was prior to this experience. So I don't expect that very many people do in a typical pregnancy.
00:05:00
Speaker
the umbilical cord will have one vein and two arteries. In Keegan's case, his cord developed with one vein and one artery. And it was known as isolated because there were no other morphological or genetic abnormalities. And that's important because single umbilical artery can be associated with genetic abnormalities, but in his case, it was not. And so he was just classified as an isolated single umbilical artery baby or an Isua baby. At the time of Keegan's birth, and we have since lobbied to have this change, isolated single umbilical artery was not considered to be a risk factor for stillbirth.
00:05:29
Speaker
And honestly, it wasn't even considered to be dangerous or high risk. The SM-FM guidelines at the time were that at most, one additional scan may be done in the third trimester for reassurance of the mother. When I was pregnant with Keegan, I immediately did a literature search on ISOOA because neuroscientists and medical writers, that's what I do, right? And I found a host of conflicting articles. Some stated that ISOOA increased birth complication, some said it wasn't dangerous.
00:05:56
Speaker
It was a lot of individual case studies and not a whole bunch of kind of put together studies. Um, but the data was really just all over the place. So I asked her OB about early delivery and was honestly kind of laughed at when, when I asked about that and we were actively discouraged from delivering him early. The official SMS and guidelines for managing it at that point was really to do nothing to maybe at the most potentially, if you feel like it, do one extra scan. I've always been a cautious person.
00:06:25
Speaker
And that really wasn't good enough for me. And my OB was also cautious and it wasn't good enough for her either. And so while she did not recommend early delivery and did discourage it, she did recommend increasing monitoring to check his movements and his growth. So starting at 34 weeks, I came in twice weekly for non-stress tests and weekly for an ultrasound. If you take into account the standard weekly appointments that kind of happened at the end of pregnancy, there were some days, there were some weeks where I was coming in four out of the five work days.
00:06:54
Speaker
So we're talking about an extremely highly monitored pregnancy. And I think it's really, really important to mention how highly monitored Keegan was because there's this narrative out there that monitoring babies is sufficient to keep them safe. And while monitoring babies does do a lot to keep them safe and obviously should be done, I'm not at all saying that it shouldn't be. Well, obviously a great deal of monitoring needs to be done.
00:07:17
Speaker
The reality is that acute fatal accidents can happen in minutes and sometimes in certain situations, monitoring isn't enough and babies need be taken just a little bit early to keep those accidents from happening. And that was our case was that when he died, he died within minutes and he should have been taken as soon as he reached 37 weeks. So Keegan died on Tuesday, November the 6th and he was born on Wednesday, November the 7th after 12 hours of labor. Both my children were 12 hours of labor.
00:07:45
Speaker
Um, the morning that he died, there was nothing that was abnormal. There was no slowing down the movement. There was no frenetic kicking. It was just a totally normal morning. I actually remember rolling over in bed that morning and hugging my husband from behind and feeling he can just drum, drum, drum, drum, drum his little feet on his daddy's back. And honestly, my husband Carl really, really cherishes that memory because that was the last time he ever felt his son move. Um.
00:08:10
Speaker
but it was just a totally, totally normal morning. I had an appointment that day because I had an appointment pretty much every day. So I got to the hospital early. You know, I strolled around a little bit. I got to the waiting room. They were running behind. I just waited. So I have no idea exactly when Keegan died. I don't know if it was on the drive to the hospital while I was strolling through the hospital, while I was sitting in the waiting room. I don't know exactly when it was, but I do know he was completely moving completely normally that morning.
00:08:38
Speaker
The office was running late that day, so I waited for quite a while in the waiting room, and I'm always going to wonder if they hadn't been running late, if they would have caught him in distress, if they hadn't been running late, if I would currently be planning for a kindergartner to enter school in the fall.
00:08:55
Speaker
At any rate, I have a very clear memory of the nurse trapping the hurt monitoring ball onto me across my belly because I was there for non-stress tests and her remarking, oh, he must have moved. Has he already flipped? And I, of course, immediately panicked.
00:09:09
Speaker
because I knew his heart should be really, really easy to find. And I knew at that moment that something was wrong. I still didn't really think that he had died though. And even after they rolled in the portable Doppler machine and showed me his heart stopped, I still didn't believe them. I made them check again, because there's no way that could be right. Surely, surely a healthy active baby doesn't just die 10 days before their due date. But he did. So
00:09:38
Speaker
I was escorted into a private room to talk to my OB and I immediately texted my husband to call me. I'd been entirely alone for everything that happened up to that point. I really had no one there to catch me when I found out that Keegan was dead. And then by myself, I had to talk to my husband and tell him that his son had died. And to hear that the heartbreak is shocking, his voice in my husband is not a very emotional person. To hear his voice just completely
00:10:08
Speaker
break and to hear his heart just completely break over the phone. I mean that's just really a conversation no one should ever have to have with their partner.
Grieving and Honoring Keegan
00:10:16
Speaker
But I did. So I was induced and once Carl arrived at the hospital then together we walked over to labor and delivery
00:10:24
Speaker
Like I said, Keegan's labor lasted 12 hours. He was born at 1253 AM on November the 7th. He weighed six pounds, 10 ounces, and he was 20 inches long, which is half an inch longer than his sister. So I guess he might've been a little bit taller than her. He was a baby. That's the thing. He was a baby.
00:10:47
Speaker
I talk about this in my book, but you know, when you go through stillbirth, people think you just stop being pregnant. And that's not true. You labor and you go through childbirth just like everybody else. And just like everybody else, you give birth to a baby. The only difference is your baby's dead. And your baby doesn't cry and your baby's heart doesn't beat. And the delivery room is completely silent. And it is the loudest silence in the world.
00:11:16
Speaker
So that was his birth. I want to pause for a second and go back to the ICU and management guidelines. So those were the guidelines that we updated with SMFM. And as you might recall, ICU was considered so benign that at most one additional scan was recommended for maternal reassurance, not even for like a medically indicated reason, right?
00:11:38
Speaker
And so I'm really proud to report that now as a result of some conversations we had with them, SMFM acknowledges ISOOA can contribute to stillbirth and still recommends an additional third trimester ultrasound for growth monitoring, but also recommends increased weekly surveillance of the baby starting at 36 weeks. Notably, we were doing a lot more than this for Keegan. Remember, I started doing twice weekly non-stress tests and weekly ultrasound at 34 weeks.
00:12:04
Speaker
And it wasn't enough. The only thing that would have saved him would have been delivery at 37 weeks, which is when babies reached term, it's early term. So under the current guidelines, early term delivery is still not permitted for Isua babies. And it's not even that it's not recommended, it's not permitted for Isua babies. So while these guidelines will undoubtedly save many babies by increasing monitoring of them and catching things like growth restriction, under them, Keegan still would have died.
00:12:31
Speaker
So there's still a ton of work to be done in this field in preventing the death of babies. My sister-in-law had that when she was pregnant with my niece and I went to the ultrasound and we came out and it was her second baby. And I remember distinctly her really worried about it. She went home and Googled it and they said exactly what you said that the response that you got and what you read is that there's absolutely nothing to worry about.
00:13:00
Speaker
But hearing this now, I'm glad that my niece is here and healthy and alive. But wow, I didn't, because I thought also, that's kind of weird though. That's an anomaly. That's not normal. So we shouldn't do anything extra. Right. I mean, my perspective is if there's anything abnormal about either the umbilical cord or the placenta, I mean, those are the lifelines of the baby, right? If there's anything abnormal other than there's a reticule risk factor for stillbirth. So take the baby as soon as the baby reaches term, which is 37 weeks. Why?
00:13:30
Speaker
complicate things more, why risk things more unnecessarily. In Keegan's case, the cause of his death, it was undoubtedly related to Isua because what happened was his umbilical cord twisted and it was more easy for his umbilical cord to form a tight twist than it would have been for a typical umbilical cord because it was thinner, it was floppier, right? So it formed a very tight twist right next to his belly button and a blood clot formed. And that was the cause of his death.
00:14:00
Speaker
So if he had not been an Isua baby, I mean, you can never say definitively this or this would or wouldn't have happened, right? But the fact that the cause of his death was his umbilical cord doing something abnormal and he had an abnormality in his umbilical cord, it's pretty clear that he should have been taken early. That's awesome that you got, not awesome that you got the information, but kind of is because it just kind of validates, you know, more for you pushing this.
00:14:28
Speaker
Right. And that was one of the things also there was, so I'm a neuroscientist, my husband's an engineer. So when Keegan died, the decision to have an autopsy was not one that we struggled with. Yeah. We knew immediately that we wanted to have an autopsy that I had to know why he died. I was already just feeling very, very guilt-ridden and I had to know why he died. And we had to also know if there was anything that would put any future pregnancies or they would put
00:14:57
Speaker
my daughter's future pregnancy is at risk, if there was some sort of gene floating through our gene pool that we didn't know about. And so we had to do everything we could to find out the reasoning for his death. And I'm so glad that we did, because once we found out, we were able to take these steps to potentially help other families. Yeah, exactly. Did you show Nicole the picture of Keegan? No. Wait, Nicole, wait, please see this baby. Isn't he beautiful? Well, you all see on her.
00:15:26
Speaker
Maybe if she shares it. Oh, I think I sent you guys this one. I'm not sure. He's a very pretty baby. Does he look like your daughter? Does he look like your daughter? Yes. So they looked very, very similar when they were born.
00:15:46
Speaker
They have the exact same, exact same eyes, the exact same cheeks, the exact same nose. They have the same forehead. The only difference really was that Keegan's hair was curlier. He had his daddy's dark Greek curls and he had a cleft in his chin. Did your daughter get to meet him at the hospital?
00:16:06
Speaker
Not in the hospital. So she has met him through photographs and through her own remembrances of him and my belly, but we didn't bring her to the hospital. And that was really a very, very hard decision. And it's one that's really kind of impossible to get right. You know, like there's no way to get that right because you're in a wrong situation. We really struggled with what to do. We didn't want to take away her chance to meet him and to make memories with him. But knowing her as we did.
00:16:32
Speaker
and knowing how little on-site support we had since we didn't have our families with us, then we ultimately decided against having her come to the hospital. There's a chapter in my book all about siblings with a stillborn infant. And in that chapter, I discussed the question of siblings in hospital, citing a study that came out in 2012 from the Journal of Perinatal Education.
00:16:52
Speaker
And in that study, then there's hundreds of brief parents that were interviewed about their thoughts on this very topic, on do older siblings come to the hospital to meet the stillborn baby. And the two large takeaways from that study was make the stillborn baby and the loss real for the siblings and take the siblings resources and prerequisites into account. I really, really love that advice because it so strongly emphasizes doing what's best for each individual child.
00:17:16
Speaker
based on their own internal resources and based on their own personality, really. The study went further and recommended that an additional trusted adult also be there. So like a grandparent or an aunt and uncle, that they also be there to kind of help guide the child through the process and meeting their sibling, because it's just too much to expect the parents to do. The parents just found out that their baby died. Their parents are just meeting their baby and then to also be expected to be their best self and guiding their living child through meeting
00:17:46
Speaker
the stillborn baby, it's just too much to expect of the parents. And so knowing our deeply feeling little girl the way that we do, and knowing that we had no onsite external familial support to help us, we decided that in our particular case, and every family will be different, which for one family is not right for another family, that we would not bring her to the hospital.
00:18:09
Speaker
And that we would work really hard to create other ways that she could understand he was real, such as through photographs. That's one of the reasons why Naomi Dennis Lee was so important to us because we knew it was going to be the only way that she would see what he looked like. And as she grew with it, she would be able to remember what he looked like. And so we just knew we would have to work really hard to create other ways that she could create memories of him. And I think that there's a lot of pressure put on parents that they have this very short, defined period of time.
00:18:37
Speaker
in which they and their living children can make memories with this stillborn baby and that after that it's done and you can't go back and you just have to get it perfect. But I don't think that that's really true. I think that there are other ways that you can still continue to make memories.
00:18:55
Speaker
even after you buried your baby. We do things constantly to keep Keegan present in our lives. We do things constantly doing things in his memory. We talk about him all the time. These things have really helped to keep him real to Kira. The things that we do in his memory have become memories in her mind associated with her brother.
00:19:15
Speaker
You know, she has her Keegan bear, which is a teddy bear that she can hug. We have his blankets from the hospital. We have his hats and his footprints and the handprints from the hospital. And these are all other ways that we're able to help make him real to her. And of course, the photographs, even though she did not physically meet him in the hospital.
00:19:32
Speaker
She was only three at the time, though. She was two and a half. Yeah, she would have I mean, she wouldn't have remembered. Yeah, she met him. Well, I love I love how you put that that's a really that's a really good way to because we do hear that so often. Like, you know, I didn't do this or I didn't do that. And now I have no chance to go back and make these memories. But you're right. You can still make memories in different ways.
00:19:53
Speaker
Yeah. So one of the things that's really important to Kira is that she likes to blow bubbles to Keegan. And that's something going all the way back to when she was two, is she would blow them bubbles. And so, you know, we just had Mother's Day and we always take bubbles with us and she always blows some bubbles. And that's a memory and that's a tradition that she now has. She has a tradition with her deceased little brother.
00:20:14
Speaker
I think that's beautiful. I just think that's really, really beautiful. And she has all these wonderful, she has very sad emotions associated with him, but she also has all these wonderful emotions associated with him. And so we can continue to kind of help her build that up as she grows. That's beautiful. It's healing for you also to see your siblings, to see your daughter
00:20:38
Speaker
How do you want to say that? It's just to create that bond with her sibling that's not even here and she has that bond that's so strong with her brother. Yeah, she does. It's pretty cool to see. Yeah. And Happy Mother's Day. Oh, thank you. Thank you. So is that Keegan's kindness a project or a
00:21:00
Speaker
So Keegan's kindness is a movement that we started to honor Keegan on his birthday, which is November the 7th. So we asked friends and family to do intentional acts of kindness or charity on or around that day. And it was something that as we were approaching his first birthday, I was really in this state of panic, because I didn't know what to do, right? I didn't feel like we could really, you know, party and celebrate because it wasn't a happy day.
00:21:25
Speaker
I didn't want the world to forget he existed. And I just wanted to honor him and to commemorate him. And I also had this feeling of all the things that he would have brought to the world.
00:21:36
Speaker
all the good that he would have brought to the world, the world was going to miss out on. And that just made me so deeply fundamentally sad. And so this is a way that we, I mean, every parent believes that their child will change the world for the better, right? And I know that he would, if I know he would, if I know that my daughter Kira will as well, but he does, he's not alive to change the world for the better. And so this is a way that even in his absence, he's still changing the world for the better because people are helping other people and helping
00:22:05
Speaker
the environment and helping animals and all these things and his memory and his name. So we've done a lot of different acts of kindness each year with it changing each year kind of based on Kira, her age, what she can do based on what we can handle emotionally that year. I really struggled being around people on his birthday. So a lot of acts of kindness that might be helping in a shelter somewhere, I can't do it because I can't be around people on his birthday.
00:22:32
Speaker
But there's still a lot of solitary acts of kindness that we can do. So for example, last year my husband and I joined up with the Seattle Green Partnership and we planted native plants along this bicycle trail.
00:22:45
Speaker
And so it was supposed to bring pollinators in. And so we spent the whole day working with Seattle Green to plant these plants along the bicycle trail. And that was something we did in his memory. Something that we do every year that my daughter is very actively involved in is donating needed goods to women and children at a women and children's shelter. And so we focus, it's called Barry's Place, the one that we like to donate to in Seattle. And we focus specifically on children that are the ages of Kira and Keegan.
00:23:12
Speaker
So last year we bought a lot of goods for a five-year-old little boy and for a seven-year-old little girl. And the year before that, it was for a four-year-old little boy and a six-year-old little girl. And then we also buy a lot of goods for the moms in those situations. Trail and park cleanups are things that Kira can do really effectively. She's got her little claw that she uses to pick up the trash on the ground and she likes putting it in her bag. And it's an easy thing for a young child to do, but it's an active thing for her to do that keeps her involved.
00:23:40
Speaker
This fall, she has for the first time asked to lead her own act of he is kindness is coming up fall. I'm really proud of her. She wants to do a drive for the Seattle Humane Society. So she wants to ask her friends and her teachers and you know, her sports teams and all those things to collect blanket and blankets and pet foods that she wants to donate to the Seattle Humane Society. And we've already spoken to them and they're on board with it.
00:24:06
Speaker
So I'm really, really proud of her that she kind of wants to take ownership over this. And it's not something that we're dragging her along to, it's something that she actively wants to do. And going back to making memories, here's another way she's making a memory for her brother. Yeah, that's amazing. It's so cool that she thought of that at such a young age. Yeah. You're doing a good job, girl. Oh, thank you. She's a wonderful, wonderful little girl. We're just really, really lucky to have her.
00:24:33
Speaker
How did you come to the decision that you wanted to write a book and how long did it take you to write it?
Writing as a Tool for Grief
00:24:40
Speaker
And, you know, just tell us about the whole process. Yeah. So I knew very soon after Lucian Keegan that I wanted to write a book.
00:24:47
Speaker
I'm a writer by nature. When I got my PhD, actually one of my favorite things is writing my dissertation, which I know is usually like the opposite of what people say, but I loved it. I loved writing my dissertation. It was just, I was in heaven sitting there with all my research papers around me just type, type, type in the way. Oh, I couldn't have been happier. Words are really how I process what's happening inside my heart. I just, I am a writer. So when I lost him, I just, I knew that I had to write and I knew that I had to share what I had written.
00:25:17
Speaker
I initially wrote a series of articles for online blogs, magazines, and I just had this visceral need to write more.
00:25:24
Speaker
Whenever I was struggling, I would turn into my writing. I remember, for example, one morning I was just having a terrible time. It was one of those mornings where I was being more short-tempered than I wanted to be. I was just really struggling. I was really sad. I just remember turning to my husband and being like, you take Cura to get hot chocolate. I need to write. There are words that need to come out of me. Come back in two hours. He was like, okay.
00:25:48
Speaker
So that's what he did. And then when he came back, then I was my best self again, and I was able to have a lovely day with the family. But for me, writing is exceedingly therapeutic.
00:25:58
Speaker
So I never really had a choice of whether or not I was going to write with something that I kind of had to do to survive the situation that we were in. In terms of when I decided to write a book, funnily enough, Still His Mom was actually the second book I've written. You probably haven't heard the first one because it's not published yet, and I'll get to that in a second. So the first is a children's book called Baby Brother Still in My Heart, and I wrote it two months after losing Keegan.
00:26:25
Speaker
um it's for the curious of the world it's for all the siblings that have lost a baby sibling to to stillbirth to kind of walk them through the emotions they might be feeling to walk them through ways that they can commemorate and love their their stillborn sibling um and the reason it's not published yet is because like I said I wrote it within the first two months of losing it of losing Keegan uh
00:26:50
Speaker
Carl is illustrating it, and he's going on five years illustrating it. So we have a little bit different pace in how we're approaching this situation. But I mean, that's fine. I mean, honestly, I'm just so happy that he wants to work on it with me. And he wants this to be like the family project that we're doing. And I would never want to push him further or faster, and he feels comfortable in his grief process. So we'll get it published when we get it published. It's just been a beautiful thing that we can work on together.
00:27:19
Speaker
I decided to write still his mama pretty early on, but, you know, we lost Keegan in 2018 and, you know, Kira was a preschooler and then COVID hit. And so then there was a lot of homeschooling of her. I did her pre-K and the first, you know, part of her kindergarten at home. So I was really occupied with that. I kind of kept thinking about writing a book and kind of trying to figure out the format and the message I wanted to convey and how I would do that. Once Kira went to kindergarten, it took me about a year to write the book.
00:27:47
Speaker
But I'd already conducted a fair amount of research before that. So I'd already done a ton of research for Keegan's Law. I'd already done a ton of research for SMFM. I'd already done a ton of research for my own sanity, because that's who I am. I already had research articles and notes on them all over my computer. And I'd already done a ton of writing. So it was one of those things where I feel like a year was actually pretty fast. But that was because I wasn't approaching a blind. I already had all this other stuff behind me supporting me to move forward.
00:28:16
Speaker
Yeah, the format is unique and I've never really read a book like it with the letters. So it's like your story intertwined with these letters and it's a lost mom who's further out. So I want to say 15 years or 16 years out, right?
00:28:33
Speaker
Um, she's about 20 years out. Yeah. 20 years. Okay. All right. I'm just confusing her with myself. And then. Oh, that's beautiful. That's me. And then, um, the other lost mom who's just, just lost her baby. And I love how they just ask each other questions back and forth because
00:28:50
Speaker
And we really, when it first happens, you're just lost and you need that. You need someone to be like, Hey, I've been through this. Like it's so reassuring finding those people and connecting and knowing like, Hey, this is going to suck for a really, really long time, but you'll make it through. You can survive this. And meeting someone that's 20 years out is so helpful. So how did you go about the format?
00:29:17
Speaker
Still His Mama is, um, it's really unique in that it's kind of a scientifically based memoir mixed with this fictional story going on at the same time. So it has 10 chapters, and you just dedicate it to a different theme associated with stillbirth. So things like siblings with stillborn infant, romantic relationships after stillbirth.
00:29:36
Speaker
preventability of syllabus, logistics and practical considerations, grief triggers, you know, these are all some of the chapters that we cover. And then each chapter is further organized into two primary sections. The first section is composed of fictional letters, as imagined between two bereaved moms, one of who was newly bereaved and the other who lost her daughter nearly 20 years prior. And I really like those letters because it kind of allows the
00:29:58
Speaker
the rawness and complexity of parental grief to be expressed and explored in a way that I think is hard to express when you're writing from a third person narrative. And then the second half of each chapter is dedicated to my own experiences, that's the memoir part, and also a scientific analysis of the literature. And that's one of the things I think that makes it really unique is that I really do talk a lot about the scientific literature around that topic. So my hope there is this will further education on stillbirth and grief among support networks.
00:30:28
Speaker
So my hope is that it will not only be the parents of stillborn babies who read this book and take comfort in it, but also their support networks and medical providers will also read it and will read the research about grief and will read the research about, oh, these are the things you have to think about in terms of romantic relationships and how they can struggle after stillbirth. And these are things you have to think about in terms of siblings with stillborn infant and oh, these are some of the logistics and practical considerations that our patients are dealing with and how can we help them through these things. So my hope is that
00:30:59
Speaker
It will not only help brief parents to feel validated unless alone, but it'll really, really be almost a guide for their support networks and being more effective in supporting them. But to answer your original question, how did I come up with the with the format of it?
00:31:18
Speaker
That's a really good question. I always say that I based the character of Sarah, who, for those of you who haven't read the book, is the mom who's 20 years out from giving birth to her stillborn baby girl. She's actually 17 years out, but almost 20 years out. I based her on my friend, who has been my grief mentor through this whole process.
00:31:40
Speaker
she and i had these just very intense text conversations i met her for the first time in a coffee shop and i just immediately had this bond with her and. Ever since then then i would have days where i was feeling really upset about something i would feel like he had been dismissed i would feel.
00:31:58
Speaker
angry at our situation, I would feel fresh here with the medical system and I would text with her and she was just so validating and so kind and she'd been through it so she knew exactly what I was talking about and she offered such lovely advice while at the same time letting me find my own way and so when I was thinking about the things that I had to offer I thought to myself gosh like I've learned so much from her
00:32:22
Speaker
And I would love to offer that to other people. And I realized that this format was really a really effective way of allowing people to have a direct insight into the brain of a brief parent immediately after the death of their child, and then, you know, almost 20 years further down the road. And then in terms of the memoir piece, then I just, I wanted to tell Keegan's story. And I had to also have the literature in there, the scientific literature, because well,
00:32:51
Speaker
I'm a neuroscientist and I just had to. I just can't, I just can't not have the science in there. It's who I am. It's in your brain. Yes. Oh, that's, that's really cool. That's how you came up with it though. Cause you had these texts conversations with, with your friend. That's pretty amazing. Now when you met her at the coffee shop, like it was just a chance meeting or had you like, someone say like, Hey, you should meet this person cause she's had a loss.
00:33:16
Speaker
She was one of those, she is one of those amazing people who has volunteered to be a peer companion. So I know it's really, really challenging to do that. And she does it. So for those who don't know what peer companions are, they're people who volunteered to go and talk to somebody who has gone through a loss and just kind of guide them through it and to be their mentor through it. And it's really, really challenging work for so many reasons. And so I was connected to her
00:33:46
Speaker
I can't remember. It was either through Parent Share Puget Sound, which is a support group here in the Seattle area, or it might have been through Star Legacy. It was one of the two connecting me to her. I can't remember which one it was, but I remember shuffling towards her in the coffee shop and being like, I don't know. I don't know about this. I don't know who this lady is. She was just very kind and welcoming and just put me at ease right away. I was very, very fortunate.
00:34:11
Speaker
Yeah, it is hard to put yourself out there even just on a normal circumstance and then all of this on top of it and you're sharing like your deepest emotions with a stranger. So it's hard. Yeah, and some of the emotions you have, you know, not all emotions are pretty emotions, right? Yeah, not all thoughts that you have are charitable kind thoughts and to share some of those thoughts with somebody who you don't really know. It's hard, right? Yes. But when you have somebody who is just
00:34:40
Speaker
She made it very evident early on that she was not there to judge. She was not there to tell you the right way to do things. She was just there to listen and support. And I really think that's one of the best things that you can do for somebody going through grief is to just listen and to just love them for who they are and what they're feeling and to just help them, help them through it. Something that one of our grief therapists said to me early on, which I just thought was a beautiful, beautiful thing. She said, emotions are like the weather. There's no such thing as a bad emotion.
00:35:09
Speaker
what you do with, well, there is bad weather, I guess. But she was like, she was like, it's just, they are what they are. You can't blame them for what they are. And emotion is an emotion. What you do with that emotion, yes, your actions are things you have to be responsible for. But your emotions, they just are what they are. And that just, when she said it, I just gave Carl and I both this
00:35:32
Speaker
feeling of just relief, you know? And this feeling of, yes, these emotions are okay because they're just emotions and emotions exist and they're not right and they're not wrong.
00:35:43
Speaker
I love that. I feel like hearing that makes so many lost parents feel better because it really is ugly. Even just dealing with your friends and family who are also expecting, it brings out some ugly emotions you didn't even know you're capable of after you've lost a baby.
00:36:04
Speaker
I just wanted to ask you to go back because you keep mentioning, you know, being a neuroscientist and in your book you talked about, you know, neuroplasticity and how we and how it relates to grief and can you just kind of expand on that like have you done any work.
00:36:22
Speaker
in that route, like with yourself or have you, like, can you just explain more about neuroplasticity, maybe? So I have not personally done work with neuroplasticity. My PhD was on myotrophic lateral sclerosis. So I was working on neurodegenerative disease, ALS neurodegenerative diseases, right? So neuroplasticity is the ability for your brain to kind of change, right? Your brain is not, your brain is not
00:36:47
Speaker
this static thing, it is plastic and it can change and it can change in ways that are helpful. And it can change in ways that are not so helpful. And so there's this this axiom neurons that fires the other wires together, which kind of refers to the idea that you can kind of create neural pathways through your brain. Well, I was asking you this because Dr. Phil mentions it all the time, like he'll have someone there on his he does though, I haven't watched him in a while because I got rid of that, that cable. But
00:37:14
Speaker
Like he'll always, like when they're struggling with something, um, a lot of, you know, trauma, he says, you know, we can do like, there's things you can do like neuroplasticity and you can read. Yes. Okay. Thank you. Thank you. Your brain. So you can, so you can turn yourself. So when you, we have this experience that's like really, really traumatizing, you can train yourself to take a deep breath.
00:37:33
Speaker
And in that moment you can kind of slow things down. You can train yourself to not go down the path of ruminating about it, but to instead be like, all right, I'm having a hard time. I'm going to do some journaling. I'm going to do some meditation. I'm going to go work out. And you can help your brain to kind of not develop these patterns that are harmful to you. Got you. And I mean, honestly, that's a place where you can, um,
00:38:01
Speaker
work with a therapist a lot to
Authentic Grief and Love
00:38:03
Speaker
help you. So like, cognitive behavioral therapy is really, really helpful for identifying triggers that cause less than ideal emotions or less, I shouldn't say bad emotions, we just said that, because less than ideal reactions in you, and then working to reframe how you think about them, right? And so that's a way that you can reframe the way your brain approaches something. And so you can work with a therapist a lot to help yourself to be able to deal with
00:38:32
Speaker
these really negative experiences in a way that doesn't have to impact you in quite a visceral way. Right. Exactly. Perfect. Do you have any advice for parents or families who are just going through this? Well, yes, there's so many things that to cover on that. Yeah.
00:38:49
Speaker
You could write a book about it. I think the best advice I ever received was to honor my grief exactly as it was, not as others thought it should be, not even as I thought that it should be because I had my own preconceived notions about grief, but exactly as it was. And, you know, grief is this all-encompassing experience. You know, it breaks your mind. It breaks your heart. It breaks your body. It just completely engulfs you.
00:39:14
Speaker
And there's really no way under, over, or around it. All you can do is go through it. And we're told that we just have to get over our losses, and we just have to get past them. But the thing that I've learned is that you can't get past grief. And you can't get past the grief because all grief is love. So there's no leaving it behind because you really can't leave your love behind. And I think it's really important to note, though, that that doesn't mean you're doomed to a life of heartbreak.
00:39:42
Speaker
I am very happy on a regular basis with my daughter and I miss my son very much every second of that happiness. So just because you are grieving does not mean that you're doomed to have a miserable existence for the rest of your life. All love ultimately has the seed of joy at the root of it, right? And so before you lost your baby, before your heart was just completely shattered, all they brought you was joy.
00:40:08
Speaker
And so that love and that joy, it's still there. So living your grief doesn't mean forgetting your sadness, because I mean, you couldn't even if you tried this just impossible. It means learning to live with sadness and joy concurrently in your heart. And so it means learning to see that the joy your baby brought to the world still exists, while simultaneously kind of acknowledging the awful like heartbreaking truth that your baby will never get to experience the world. So
00:40:41
Speaker
I guess what I've really learned over time is I can't really ever lose Keegan. And he's not here in the way that I want him to be, obviously. You know, I wish that he were, you know, this sticky little five-year-old who was breaking things and tracking dirt into the house on the soccer cleats and all those things, but he's not. He's not. And he never will be. But I can really never lose him.
00:41:05
Speaker
And the reason for that is that he's changed me and he's changed my husband and he's changed my daughter. And so because he changed all of us, then he changed the world. And that's true of all babies. That's true of all babies who die. They changed their parents. And so they changed the world. And so our task becomes seeing them and the unfolding of life and love around us. So my advice to newly briefed parents would be don't squelch your grief to make the people around you feel comfortable.
00:41:33
Speaker
Don't try or even make yourself feel comfortable in terms of what you think you should be doing. Don't try to mold it to fit what society tells you you should or shouldn't be doing. Just be authentically yourself and love your baby and bring that joy forward with you eventually. The joy for your baby will still be there because all grief really is love and loves where you can always find your baby. Thank you. Yes, that's very well put. I love that. Thank you.
00:42:02
Speaker
honor my grief exactly as it was. I love that.
00:42:06
Speaker
Yeah, because you hear a lot of people say, on the opposite side, like, you know, I felt bad because I was laughing today, or I was smiling so much today. And then I feel like people are looking at me like, you know, your baby just died. And then they, you know, they say, like, I feel like I shouldn't be smiling or laughing. But in that you just have to honor what the emotions that you're having at that time, if you're happy, it's okay, be happy for a little bit. You know, you can be happy and sad at the same time. Yeah, that's fine, too. And
00:42:34
Speaker
Yeah, we definitely struggled a lot with that too. I remember in the beginning just feeling so guilty when I would first began to have moments of happiness again, this kind of soul-crushing guilt and it wasn't wrong to feel happy. It was just, it's because we're humans, right? We're humans and our emotions are here and there and there and they just go all over the place and that's just normal. That's just the normal human
00:42:58
Speaker
reaction to life and to just allow yourself to feel wherever you're feeling in that moment and to kind of expand the emotional footprint of your heart to allow yourself to feel conflicting things at the same time, even, you know, in a very real way, I'm able to be heartbroken and happy, you know, on Christmas, I am always just completely devastated that Keegan was not there. But oh, I love watching my daughter open her presents, you know? And so I'm so happy to see her do that. And I'm so sad that he's not there. And I feel both of those the exact same time.
00:43:30
Speaker
I feel that. I feel that in my heart for you. Yeah. I can just imagine. How did you choose his name?
00:43:38
Speaker
Well, his full name is Keegan Christopher Hazilius. It was really important to me that both my children have Irish first names. Our last name is Hazilius, which is Greek. And I wanted an Irish name in there as well. So we're looking Irish names, and it's kind of really struggling. And then we came across Keegan, and I liked the way it sounded. But I had my course being me, I had a whole spreadsheet on names, the names, the origin, the popularity, the meaning, and all that stuff.
00:44:04
Speaker
check the meaning and it turns out that Keegan means fiery thinker and that was really just kind of perfect because it completely kind of expressed our hopes and our dreams for him which would keep you a little fiery thinker and he would change the world which you know of course he has. His middle name is Christopher which is after Carl's father Christos
00:44:22
Speaker
in the Greek tradition, then baby boys are named after the patriarch of the family, you know, after the grandpa or the papu. So according to tradition, Keegan's first name actually should have been after his grandpa, but it was really important to us that Keegan have his own first name. So he gave his middle name instead. So
00:44:40
Speaker
I'm just, I'm really glad that Keegan's name does include Christopher in it, because four months after we lost Keegan, then Christos passed away. And his funeral was actually held on the five month anniversary of Keegan's death. So that was a really, really hard day for Carl and I. But I'm just so glad that Keegan had his name in it, because I mean, Christos was just such a kind, wonderful
00:45:05
Speaker
Hard-working man and he was a wonderful father to his children and I'm really just glad that he knew how much we loved him before we lost him And I'm really glad that Keegan, you know got to share his name and so so that's it So, you know Keegan Christopher has alias was our little fiery thinker and the latest in the hazardous family line. Oh, I love that I love that too Fiery thinker I didn't know that that's what it meant. That's really cool. I
00:45:30
Speaker
I mean, you know, the way that they define names is like sometimes they'll have slightly different definitions depending where you look. Yeah. Yeah. That's the definition that we embrace. Yeah. That very means perfect.
00:45:45
Speaker
So Dr. Hadzilias, thank you so much for being here today and for sharing your story with our listeners. Her book titled Still His Mama is available on Amazon. You can follow her on Instagram at still underscore his underscore mama. Also, please leave us a review on Apple or Spotify. And thank you so much for listening and we'll see you next episode.
00:46:05
Speaker
Thank you so much for tuning into the latest episode of The Blindsided Podcast. We truly appreciate your support and time you spent with us. If you have a personal story you'd like to share on the show, don't hesitate to reach out to us. You can send us an email at nicolewiththeblindsided.com or desiré at theblindsided.com.
00:46:24
Speaker
For more episodes, make sure to follow on your favorite podcast app. Just search the blindsided podcast and hit that follow button. You can also connect with us on social media too. You can find us on Facebook and Instagram at the blindsided podcast. We love engaging with our listeners and hearing your thoughts on each episode.
00:46:42
Speaker
And before you go, consider leaving a rating and review for our show. Your feedback helps us reach more listeners who might find value in the stories and discussions we share. Once again, thank you for listening and being a part of the Blindsided community.