99: Feeling powerless in grief - a LIVE session with Jen Canvassar

Foreign.

Welcome to Grief and Guts. I'm your host, Melissa Dugulecki. It is my honor and privilege to serve you by sharing stories, tools, interviews and strategies that will help you transition from what do I do now? How do I get through this? Those feelings of overwhelm and uncertainty to truly standing in your power. From my grief journey in losing my daughter laden in 2014 that I learned, practiced, was exposed to all these tools, but they are not grief specific. In fact, they apply universally to all of our unique situations. You've already done the hard part by showing up, by opening up to something new. So without any further ado, let's get to the good stuff that's going to help you in your journey. Let's dive in. Hey, everyone. Welcome back to Grief and Guts. I'm your host, Melissa, and this is a special week and a special episode. For those of you who don't know, I lost my daughter Layden in 2014 to necrotizing Enterpolitis. Her case was termed a catastrophe, and she had originally been treated primarily for a cardiac condition. But when she died, her heart was fully functioning and it was her gut neck that was her cause of death. Now this week is Congenital Heart Defect Awareness Week, and for the very first time, the neck Society is honoring it. And that's because in the years since Leiden passed, almost seven years ago, six and a half years ago, so much research has come out linking congenital heart disease to neck. So in this episode, I'm actually going to be sharing a bit about my story. We're going to be educating on CHD and neck and, you know, by listening, not only will you understand a little bit more about grief and trauma and navigating it and how to shift our energy when we feel powerless.

Right.

I'll talk about how I feel powerless as a mother and how I navigate that. And I know many of you feel powerless in your own ways, in your own traumas, grief and losses. That's a real feeling. So I'll hit that and also just share a few bits about nec. And I appreciate you guys listening to understand Layden's story, but also to educate yourselves and maybe other people, because through sharing, perhaps we can save another family from hearing that their child's case was a catastrophe.

So, hey, everybody. I'm Jen. I'm the founder and the director of the Next Society. I lost my son Micah to complications of the disease, and I feel really privileged to have Melissa as my friend. She also serves on the Next Society's board of directors, and she's joining us today to share her story and to talk about CHD Awareness Week, which starts this Sunday. So, Melissa, I'll hand it over.

Thank you so much. You know, I always say that I wish that we weren't friends, but I am grateful, given the circumstances that we have connected. And you've been such a driving force in allowing me to feel empowered, because I think when you. When you lose your child, it's so disempowering, and you feel like, what could I have done? And, you know, can't do anything now other than raise awareness and share and hopefully prevent any other families from, you know, navigating the journey that we know, you know. So my name is Melissa, and I am Layden's mom. My daughter Layden would be 7 on February 20th of this year, this month. So it's a lot this month with CHD awareness and what we're doing, but it's really important, and I'm just grateful for you guys for being here so that I can hopefully allow her light to help others grow and learn and improve. My daughter Leiden was diagnosed when I was pregnant with congenital heart disease. And we weren't. I mean, of course it's concerning. We weren't overly concerned, maybe see my scar? I have congenital heart disease. And I went on to play Division 1 college athletics and to run marathons. And it was a relatively simple repair, and we anticipated the same to be true for my daughter when she was born. They had a lot of people there to observe and all hands on deck. They said it was actually less intricate than they had anticipated. They had thought there might be a coarctation of the aorta, but that wasn't an issue. So she had an ASD and a vsd, which are two small holes in her heart. What they wanted to do is she was doing really well, and they wanted us to go home and then for her to get stronger, and then they would do the surgery, the repair. So we went home, and the criteria was she had to gain weight. So we were using breast milk with formula in it and vegetable oil in it. And she was very fussy, and she was refusing her feeds. She was very gassy and bloated. I didn't know what neck was. No one had talked about it. In hindsight, it was pretty loud symptoms. We were home for about three weeks, and she wasn't growing at all. She didn't gain any weight. And they said, all right, well, let's come in and we'll do the full heart repair. The morning she went in for her heart repair, the nurse Observed blood in her stool. So they put her on what's called neck watch and decided instead of doing the full repair of the heart, they would place a PA band on her heart to constrict blood flow. And then we were going to go home, and we come back in a couple years. The criteria for her going home was weight gain, and she continued to not gain weight. They put an NG tube in her, which is, if anyone watching isn't familiar. It's like those little feeding tubes that go into your nose, like a little yellow tube. And she hated it. She would rip it out. She would cry during her feeds. I remember one time I stopped her feed from happening and I said, something is wrong, Something is wrong. And this went on from March until May, so almost two months. And she didn't gain an ounce. She was at her birth weight still at three months old. And they said, okay, we're going to do the full heart repair. So they did the full heart repair. They said it went beautifully, everything was good, and we were going to go home. And we were like, thank goodness we've been here for a few months. And now, in hindsight, I didn't give anything for one more night, anything. She had a bottle after, like two days after or like 72 hours or something after her heart repair. And right after that, her stomach began expanding. They went in and did an exploratory surgery, and they removed dead intestine, and there was still no shock of neck. They said that some intestine had died during the procedure and that it would be about another three weeks delay and then we were going to go home. And she quickly went downhill. Two days later, they wanted to do another abdominal surgery, and this time they left her abdomen open. And they said it was angry, but there was no more dead intestine. And this was just going to be a continued delay, but she would recover. A couple days later, they put her on what's called ecmo, which is basically life support. So there was like a 247 nurse running her ECMO machine and then a 247 nurse tending to her. And the ECMO basically flows everything. It does all the work for her body. And the goal is that she would rest and recover. And I think, who knows? I'm not a doctor, but from a parent's perspective, she seemed to get a lot sicker. She began having green and yellow stuff coming out of her, a lot of blood. And there was thoughts that it was too intense for her body. Putting her on ECMO is very controversial. And the team was Very split on that. They put her on ecmo, and this was the beginning of June. Now, her surgery had been May 14, so it'd been a couple weeks. She reached the threshold, two weeks on ECMO that they felt safe. Her heart was still functioning, and her brain wasn't having any brain bleeds, which are two major concerns when you're on ecmo. So they took off of ecmo and they said she wasn't going to live. Our entire family came in. People flew in. We said goodbye. We did her welcoming ceremony, our church's form of a baptism, and they took her off of ecmo, and she lived. And I thought, well, this girl, she's not done. She's fighting. She was fighting so hard. I'll never forget sprinting back to her room like, what do you mean, she's alive? We just said goodbye to her. And the next hurdle was dialysis. And they put her on dialysis, and she adjusted very well to that. And it was about a couple more weeks. And for the very first time, I saw her crying. And I knew something was wrong through all of this. I mean, she was just in bed. I couldn't hold her this entire time. She had tubes everywhere. Her abdomen was open. It was awful. It was absolutely awful. You know, I was just watching. I'm gonna get emotional, but just watching my child die. And in mid June, they said it was time for a family meeting. And I knew. And at this point, I didn't trust. I didn't trust anyone. And I said, this is the only doctor I trust. So she came in and basically said Laden was suffering and had zero percent chance to live. And we knew. And so her father and I held her in her arms on June 19, 2014, for her last breath. And, you know, it's been devastating.

It's forever devastating. Forever and ever.

Yeah.

We're just so grateful for, you know, sharing her with us and allowing us to share her light and share her story and really raise awareness. I mean, when I first started the neck society after. After Micah died and families started to find out about the neck society, at first we were only connected with other families who had preemies and who had premature babies who had developed neck. And we were really led to believe that neck is a disease of prematurity and that it doesn't happen to babies who are born at term. And so we really should just be focused on preemies and babies that are in the nicu. But Laden was never in the nicu, right?

Never in the nicu.

And so, yeah, go ahead.

I was gonna say it's hard to not play the what if game. Yeah, right. And I try not to because it's an exhausting way to live. But it's a truth. It's a reality. The what ifs, you know, I. I didn't include this, but the doctors termed her case a catastrophe. They told us she had a 97% chance of survival. You know, they said they were going to learn from it, but it was termed a catastrophe. And she wasn't diagnosed with NAC until her death certificate. That was her first actual diagnosis of nac. And I just felt really blindsided. I felt, you know, for lack of a better term, punched in the gut. I know neck is related to gut and intestines, but it's like a whole other layer on top of the grief of what if I knew, you know.

Yeah. What if you had been given information and knew about the risk factors and the protective factors? And that neck was even something that you should be thinking about when you had a full term baby that was diagnosed with a heart condition. So that's kind of where we find ourselves now. Right. Is like speaking, spreading that message that Layden has shared with us that full term babies, especially with heart conditions, can develop nac. And they do. And sometimes they survive and sometimes, tragically, like your experience, they don't. And so I guess, like, that has. What's led us to where we are now in terms of. There's the CHD Awareness Week coming up. It starts February 7th through February 14th. This is Heart Awareness Month. Actually, for the first time, the next society will be recognizing this and honoring babies like Laden and raising awareness and hopefully we can, not just for the families, but for healthcare providers. Because I know a lot of healthcare providers aren't even aware of the connection between neck and heart disease in babies.

Yeah. One of the things we kept hearing was when they had the NG tube in and before she went in for the full heart surgery, neck did come up. Actually put our neck watch one other time, but they took her off and said it was a milk allergy. And they said, well, she's not premature. And I remember, in my mind, I ruled it out, like, okay, well, the doctor said it's not neck because she wasn't premature. And I don't know.

Right.

I didn't know. And so if, like, one person hears this and advocates or can, you know, think differently or more expansively or we expand research, I mean, that's, I feel like my responsibility to do for Laden.

Yeah, I absolutely agree. It's like the thought that, oh, it can't happen to them because they weren't born prematurely, and that's just false. And we've seen so many stories like yours that these babies can and do develop neck. And so you'll see in the comments section, we have our colleague, Erin. Thank you, Erin, who's sharing Layden's blog where Melissa shares her story and then some of the recent resources that we've developed around cardiac neck. So we hosted a webinar that Melissa participated and some of our other members of our team participated in really looking at cardiac neck, so neck in babies with heart conditions. So thank you again, Erin, for sharing that resource and thanks, Melissa, for participating in that really powerful webinar. I think that was the first webinar ever that was ever focused on neck and heart babies.

Yeah, no, it's so important. Anyone here who has or who watches later, you know, if you're, you know, first of all, if you're in the medical field, like, thank you. Thank you. And thank you for learning and for, you know, challenging norms or challenging, you know, statements such as NAC doesn't impact babies outside of prematurity. Like, thank you for challenging that. Like, you're speaking for us and for any parents or family members of a sick child. Like, you know, obviously, our hearts are with you. And I think the most important thing we can do is just continue to raise awareness and have these difficult conversations. Like, this is not an easy conversation, but it's important and it's necessary to continue to grow and improve.

It's tragic, and it will always be tragic and devastating for us. Absolutely. And I see in the link that was just shared, if you have a story that you'd like to share, and I think that could be for healthcare providers as well. You know, it says, like, share your, I think, family story. And so we're really mostly thinking often about the patient, families who've been personally impacted by NAC or with congenital heart disease and how NEC may have affected their life. But I think even for healthcare providers, they have stories, too. And so if you are a healthcare provider and you have a story you'd like to share, we'd love to highlight that.

Yeah, absolutely. And it's like, you know, everyone uses the best tools that they have. But I think Layden's case, in many cases are evidence that we need better tools. Right. We need better tools. And I know that that's what the next society's mission is. And it's really important. It's super important. And I think, you know, One thing that I just. I would share in my experience, this may not ring true everywhere, but there was almost this unspoken hierarchy of different parts of disease or impact, and it was almost like cardiac trumped gastro for Laden. And I think we really need to remember to think holistically, because they all connect to each other. And her heart disease likely contributed to poorly perfused intestines.

Right.

But then we need to talk about poorly perfused intestines making a baby more vulnerable to neck.

Yeah. And possible ways that we can support babies who are at increased risk, how we can reduce their risk, how we can offer them more protection, and how the people who are caring for them can just be more aware. And so, absolutely, we need to increase awareness with healthcare providers, but even with patient families, like, as you mentioned, you didn't have access to any information. You didn't know that neck was even a thing. Neither did I. I would say most families, before their baby's diagnosed, we've never heard of the disease. And so it's hard to advocate for your child and to really be engaged and to be part of that care team when you lack the information that's necessary to contribute in a meaningful way. I think it's really important that we all be more aware and have access to information.

I also think it's important, you know, for. And our. Her nurses. I mean, they were like our family, you know, and they were at her service, and I'm still connected to them. So it's like, there's. I have so much love there. But one thing I think is helpful for any healthcare provider to maybe hear from a parent's perspective is like, we're almost seeking subconsciously. Like, I wasn't consciously seeking relief, but subconsciously I was seeking relief because I had spent, you know, spent 99 nights in the hospital. Right. And so if somebody says to me, well, it can't be neck because she's premature, like, that's a relief. And I just rule it out. Right. And as a parent, like, I needed to hear, and I know they didn't know, but, like, we need to be really careful about these kind of absolute phrases and sentences, because now these are the things that haunt me. And we're coming up on seven years, you know, and it haunts me.

So I couldn't agree with you more. I remember there were nurses and, you know, other healthcare providers, most obviously, we loved them. They were like, just like you, part of our family. We adored them. They were crucial to our team, and I'm still connected with them. But we had some that would say things like, don't worry, Micah is going to be okay, or, everything's going to work out. He's going to get through this. And I know they were trying to be encouraging, but it made like, you. It's like, okay, like, I don't have to worry that much. Going to be. And so you just believe it and.

Right, yeah. No, I agree and I really appreciate it. There was one doctor who said to me, like, Melissa, like, this is very serious, you know, and. But it wasn't until it got to the point of no return. But it got to that point of no return. And it was like, even after she came off ECMO and she lived as a mother, I'm seeing my daughter come off life support and live. I'm like, this girl, she's good, you know? And so really having those difficult, serious, direct conversations is so important.

I couldn't agree more. Like, just not sugarcoating things and not trying to paint a picture that's not accurate for us. When you said that when they pulled you into that family meeting, you kind of knew what you were expecting. And I think that's amazing because I remember when they pulled me in for my family meeting to tell me that Micah was dying, my mind was not there yet. Like, I was still in the. He's going to be okay. He's going to get through this mode. And so, again, like, I think it's just so important that. That healthcare providers really, like you said, provide very clear information about what's happening to our children and. Yeah, exactly. What else would be helpful for us to talk about? We talked about CT Awareness Week. I should share that in addition to Laden's story, we're going to be highlighting, I believe, seven other families that have been affected by neck and heart disease. These families were not aware, I would say, that most of the families that we're going to be featuring didn't even know about the connection between heart disease and neck. And so we reached out and asked them to share their story, and many of them were like, wait, there's a connection between neck and congenital heart defects in babies? Like, I had no idea. And this is years after their baby was diagnosed with neck and had spent time in the. In the hospital with their heart condition. So we're going to be featuring those stories over the next week. And thank you to the families who have been so generous about sharing their baby stories. Again, some of those families have lost their children, and so we're just so grateful to them for sharing their children yeah, yeah.

And it's so. I just think, you know, losing your child is an unimaginable pain. You know, I'm gonna get emotional again, but it's an unimaginable pain. And the layer on top of it, of the what if is really hard, you know, really, really hard. And of course rationally we know we can't do that, but when there's literally data and research that shows a lot of what if. Right. It's really hard. And so I think, you know, by having these conversations, by people sharing their stories, by healthcare providers being committed to expanding, like we're at least, like we're at least looking to lift the layer of what if. Like if that's what we can do right now, like let's lift that layer because it's a really heavy layer that we do have control over. There's a lot we don't have control over, but we do have control over that.

Yeah, I absolutely agree with you. And I think there are even the practical things that we can do. One of our scientific advisory council members, Dr. Amy Hare, recently looked at babies with heart conditions and their neck outcomes and their exposure to an all human milk diet versus something that's been fortified or where they were given formula. And she has been able to show that babies who receive an all human milk diet actually have a lower risk of nac. And so there are things that we can do and I think again like just raising awareness, but then looking at what are the things that we can put into practice right now and be aware of. And thank you to those who are sharing their stories in the comments. It's really helpful and if you are interested, you can click on that share your story link and you can submit it to us. We'd love to hear it.

I can't see the comments on my computer, but I will be reading them all after. And I appreciate everyone sharing and you know, myself, I'm happy to personally connect to with anyone who has more questions on my experience or on Laden or on my experience in supporting the next society and how you can do that too, because there are so many ways to support the next society and it's just one mission, you know?

Yeah, thank you. And I think that's what we talked about yesterday when we met for a practice run. We talked about different ways that people can, like what do they do from here? So they just listen to your powerful and devastating tragic story about Laden. They know CHD awareness week is coming up, so what can they do? So one, they can share the CHD graphics that our amazing colleague Erin has created. And to all of the generous families who've contributed their stories so you can share those with your friends and family and help us again, elevate that conversation that there is an increased risk in neck for heart babies. So that's one thing we can do. You can check out the webinar that Melissa and other members of our team put on last year about cardiac neck. The link is in the comments. If you have your own story that you'd like to share, either about neck or about congenital heart defects in neck, or if you're a health care provider and you have a story you'd like to share, we'd love to hear it. And then, of course, Melissa was just saying you could also donate to the Neck Society, and that's always incredibly appreciated. We are a very small nonprofit organization, and we rely on charitable donations from people like you. So thank you to everyone who has generously gifted.

Seriously, thank you. Honestly, it means so much.

Well, I think that's. I think we covered everything. Anything else that you can think of, Melissa?

No, I just, again, want to just reinforce. I know I've said it, but these difficult conversations are really important. And, you know, if you know anybody who has a child with congenital heart disease or is expecting one or premature, like, share information with them, let them do their research. If you're supporting anyone in grief, don't shy away from these difficult conversations because it's a. It's a part of our process and our story. And it's of the alternative of not speaking about it. It's the better of two not great options, you know, and I know a lot of people shy away from conversations and what if. And neck. And. And of course, we can't fit in that place always. Right. We have to be proactive in solutions and moving forward. But having these conversations is invaluable. So thank you.

And you just reminded me, I know we're, like, trying to wrap up, but you reminded me of two other things I wanted to mention. So, one, the next society has a really, I think, powerful resource, and it's called 10 Things All NICU Families need to Know. Maybe we need to revise the title of that again to be inclusive of families that are outside of the NICU. But it basically talks about 10 things that families with medically fragile infants or who are at increased risk of neck really need to keep in mind as they are providing, you know, those earliest care to their babies in the hospital. And it talks about things like being engaged and asking questions and really like speaking up and being an informed member of your baby's care team and how to even do that, because it can be so challenging when you're thrown into this situation where you never expected to be and you feel unprepared and you feel uninformed. So how do you get to the place where you feel comfortable enough and you have access to enough information to ask those meaningful questions? So we have a little bit of a toolkit to help parents get there. The other thing you mentioned about grief, I mean, even if our babies died years ago, like mine and Melissa, we lost our children years ago, and yet we carry that with us every moment of every day. It never stops. It never goes away. We will never stop mothering our babies that we lost. And so we want to talk about them. We want to hear their names. And so absolutely, Melissa, I couldn't agree more. Is, like, for everyone else, like, not being shy about talking about those babies that are no longer physically with us because they are always with us 100%.

Thank you, Jen, for having me on.

Thank you. And thank you, Erin, for sharing that resource. In the comment section, she just pulled up the 10 things all parents need to know. All right. I wish. We all wish we had that when we were in the nicu. Those are things I'm like, why didn't anyone tell me? And now we pass that information on to all of you and hope that it can help you out there. So, Melissa, thank you for sharing Layden with us. Thank you for getting us to a place where we recognize the importance of honoring CHD Awareness Week. Thank you to all the families who have so generously shared their children and stories with us and to the next Society team. Thank you for making all this possible.

Thank you all so much for being here at Grief and Guts as Layden's mom, being able to spread the stories, the strategies, the lessons I have learned through Laden and from Layden is the thing that means the most to me in this world and allowing my daughter's short life to have long and lasting impact by shining her light. Truly, nothing means more if you align with and believe in the work that we're doing here in these messages. The best way to give back and to spread this out into the world is to rate and review on Spotify and on itunes. Thank you for taking just a moment to do that. Feel free to shoot me a message. Let me know what you want to hear more of, what you want to see more of. I am here to serve. I'm grateful to do so. And I'm cheering you on in your journeys, always.