Creating Change: The Heart Behind Embers of Love

What happens when a tiny heart warrior inspires a movement of love and advocacy? In this powerful conversation, I sit down with Haley Graham, whose daughter Emberly Dawn was born with multiple heart defects, including a rare Taussig-Bing anomaly. Haley takes us through the emotional journey from that first concerning ultrasound to the founding of Embers of Love, a nonprofit that's changing lives across Manitoba.

Haley shares the raw truth of those early days—the quiet car ride home after receiving concerning news at her 41-week ultrasound, being flown from Winnipeg to Edmonton for emergency treatment just days after Emberly's birth, and the month spent in a hotel across from the children's hospital. Her story captures both the inherent isolation of receiving a CHD diagnosis and the profound community support that emerged to sustain them.

The name "Embers of Love" came from a touching observation made during Emberly's hospital stay—that this tiny baby somehow "spreads embers of love to everyone she meets." What began with handmade keychains and candles has blossomed into a significant advocacy organization that's participated in over 35 initiatives since 2023. From donating sound machines to the NICU to organizing craft kits for Heart Camp campers, Haley shows how personal experience can transform into meaningful community action.

Most moving is Haley's reflection on how Amberlee has become "the flame to our family fire," completely shifting their perspective on what matters in life. Her story reminds us that even in our most vulnerable moments, we can find purpose, create lasting change, and spread those precious embers of love to others walking similar paths.

Ready to get involved in supporting the CHD community? Visit www.heartsunitetheglobe.com to learn how you can join our volunteer team and make a difference in the lives of heart warriors and their families.

Links:

Embers of Love: https://www.embersoflove.ca/

World’s smallest pacemaker story: https://tinyurl.com/TinyPmaker

Fascinating article about the history of the Taussig-Bing Anomaly. https://pmc.ncbi.nlm.nih.gov/articles/PMC2801930/

Chapters

• 0:00 Haley Graham (audio only)
• 24:46 Segment 3

Transcript

Haley Graham: When Emberly was in the hospital recovering from her surgery, a family member had made the comment that she spreads Embers of Love to everyone she meets, and we could not agree more.

Anna Jaworski: Hello, my friends and welcome to Heart to Heart with Anna. I am Anna Jaworski and a heart mom to my amazing daughter who is post-Fontan and will be 31 years old in August, 2025. I'm so glad you're joining me today. Before we get to our touching interview with Haley Graham, a devoted heart mom and founder, of Embers of Love, a nonprofit inspired by her daughter Emberly. I'd like to take a few minutes to share some exciting updates and a bit of personal news. As many of you know, my family and I have a serious case of wanderlust. We love to explore new places and make memories together, and this year, one of our longtime dreams is finally coming true. For over a decade now, I've had an Alaskan cruise on my [00:01:00] bucket list, and I'm thrilled to say that this August we're making it happen.

We'll be cruising with Holland America for the first time, and I can't wait to see the glaciers, the wildlife, and experience the unique beauty of Alaska. Of course, the timing has been a little nerve wracking with the recent earthquake off the coast of Russia. Like many of you, I've been keeping a close eye on tsunami warnings around the Pacific Rim, including Alaska and Hawaii. Thankfully, as of now, there's been no reported loss of life, and I'm so relieved. My heart and prayers go out to everyone in the affected regions, and I hope that by the time we set sail, the ocean will be calm once again. If you've ever been on an Alaskan cruise, especially with Holland America, I'd love to hear from you. What was your favorite part of the trip? Any excursions you'd recommend? I know many of you are seasoned travelers, and I'd love to hear your stories, but that's not the only exciting trip I'm taking in [00:02:00] August.

 Right after the cruise, I'll be heading straight to Podcast Movement 2025 in Dallas, Texas. Now, for me, Podcast Movement isn't just a conference. It's like summer camp for podcasters. It's where I get to learn, grow, and connect with others who are passionate about sharing stories and building community through audio. What makes this year even more special is that Hearts Unite The Globe is sending six volunteers to the conference.

Last year we sent three, Sheri Turner, Annie Ulchak, and myself. We learned so much and brought that knowledge back to the organization. This year, we're expanding that circle in a big way.

Joining us this year are Sheri Turner and Michael Liben, host of Bereaved But Still Me. For both of them, this is their second Podcast Movement and we're also welcoming three new faces. Ayrton Beatty, all the way from Scotland. Nicholle Bilodeau, who many of you may recognize from her work with the CHC Podcast [00:03:00] and Spencer Keaton, a fellow Texan and passionate volunteer.

I'm beyond excited to experience the conference. With this incredible team and I know they'll come back even more energized to continue the work we do to support the CHD and bereaved communities.

After the conference, I'll be leading our HUG Retreat that's short for Hearts Unite the Globe. It's a time for reflection, renewal, and planning for the future. Part of the retreat will be held in person, but we'll also have a virtual component.

So if you've been thinking about volunteering with one of our podcasts, or maybe you're just curious about what goes on behind the scenes, I'd love to invite you to join us. Just drop me a message at Anna@hearttoheartwithanna.com and I'll be happy to send you the Zoom link. The HUG Retreat 2025 is happening August 22nd and 23rd in Fort Worth, Texas, and it's shaping up to be something really special.

Our theme this year is 'Where Hearts Connect and Stories Grow,' [00:04:00] and that's exactly what we hope to do. Come together as a community, reflect on what we've learned, and find ways to grow together. If you're curious about what we're up to or maybe considering becoming a volunteer, we'd love for you to join us for one of the virtual sessions.

You can find the full retreat itinerary in our Facebook group, which is Hearts Unite the Globe Volunteers, or by clicking the link in this episode's show notes.

Before we move into today's interview, I want to take a moment to share a piece of promising news from the CHD world.

There's been an exciting breakthrough that could change how we care for some of our most fragile heart warriors. Scientists at Northwestern University and George Washington University have developed the world's smallest pacemaker and get this, it's dissolvable. This [00:05:00] rice-sized device can be injected with a syringe and it's designed to support newborns recovering from heart surgery, including many babies with complex congenital heart defects. Traditional pacemakers can be bulky and require invasive surgery, and the leads can be especially problematic in tiny newborns. But this new bioresorbable device eliminates wires and dissolves naturally in the body over a few weeks. It was designed with babies recovering from CHD surgeries in mind, including those undergoing staged surgeries like the Norwood or arterial switch operation.

The pacemaker has already shown promise in early animal trials, and it could become a safer, more effective option for supporting infants in critical recovery stages. It's innovations like this that remind us why research, and supporting that research, is so vital to our [00:06:00] community. If you'd like to read more about this tiny marvel, I'll include a link in the show notes.

Coming up next is my conversation with Haley Graham, a story filled with courage, love, and purpose. You won't want to miss hearing how little Emberly Dawn inspired a movement of compassion and support through Embers of Love. So stick around. And as always, thank you for being part of our heart to heart community. 

HUG Disclaimer: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of heart unite the globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Anna Jaworski: Welcome to Heart to Heart with Anna. I am Anna Jaworski and a heart mom to hope my 30-year-old amazing daughter Haley Graham is a passionate advocate for congenital heart defect or CHD awareness and family support. [00:07:00] She is the founder of Embers of Love, where she shares personal experiences, educational resources, and organizes monthly initiatives to support the CHD community.

As a board member of the Circle of Hearts Family Support Network and a foundation family with the Children's Hospital Foundation of Manitoba, Haley strives to inspire hope, foster connections, and create a lasting impact for families navigating their CHD journeys. Haley's daughter Emberly Dawn was born on December 27th, 2022, with multiple heart defects.

After undergoing a major open-heart surgery and several catheter procedures, Emberly is now thriving at home. Although they know Emberly has more surgeries in her future, Haley and her family continue to support Emberly's ongoing care, celebrating each milestone as they face the challenges of CHD with unwavering strength and love.

Haley's journey fuels her commitment to making a difference for families facing [00:08:00] similar experiences. Welcome to Hard to Heart with Anna, Haley. 

Haley Graham: Hi Anna. Thank you so much for having me here. I'm so happy to be here and talk about our story. 

Anna Jaworski: I'm so happy to meet another heart Mom. I love your daughter's name, you have to tell me, is that a family name?

How did you come up with Emberly Dawn? It's such a beautiful name. 

Haley Graham: Thank you so much. Dawn is actually my late aunt's name. She passed away about 14 years ago. She was just a really special person in my life and it was always something that was kind of hard for me to deal with her not being able to meet my daughter.

So I think it was the least that I could do by giving her, her name and Emberly, believe it or not, actually just came to me in the middle of the night. I woke up and that name was just in my mind, I've never heard it before. I have never met anybody with that name before. We actually didn't even know the gender of Emberly before [00:09:00] she was born.

It stuck with me. When her dad saw her for the first time, and when we saw that she was a she, he came up to me and said, she's Emberly. She's meant to be an Emberly. And that's where we got Emberly Dawn from. 

Anna Jaworski: Oh my gosh, that's such a sweet story.

I love that. When I was typing out the script and I put Emberly, my AI program kept underlining Emberly. Like, no, you spelled this wrong. 

Haley Graham: Right. 

It's interesting because her baby book, when we were filling it out, one of the things was famous people that share her name or celebrities, historical figures and we tried looking and we couldn't find anybody of significance with that name. So we love how unique it is and it fits her perfectly. 

Anna Jaworski: Absolutely. I think she's a one-of-a-kind kiddo. So let's talk about when you first learned that your sweet daughter was going to have a heart defect.[00:10:00] 

Haley Graham: So the first time anything heart-related was even mentioned to us was actually during my 41-week ultrasound in preparation for my induction. The technician who was conducting the scan, she paused and she told us that she was having trouble seeing something on the scan that she wanted to see.

So she was gonna request a doctor to come in and have a look. That was her first red flag. She left the room and a few moments later she came back and with the doctor, the doctor continued the scan, and it didn't take her long. She stopped. She turned to us to tell us that she noticed what she described as shadowing on our baby's heart.

She continued to say that because our baby was so big and because there was not a lot of space left, because I was 41 weeks already, that there was the potential that it [00:11:00] could just be shadowing. However, she made a comment that she took a look back at our 20 week scan and she noticed the same shadowing.

Her words to us were, she didn't know why it wasn't appreciated at the 20 week scan. And she said, because I am gonna be induced in the next few days anyways, that there's nothing that they can do at this point. We were sent on our way from that appointment with a last message that when I go into labor, that I need to inform the delivering doctor that when my baby is born, her heart needs to be checked. I think that was probably the quietest car ride home. We didn't really know what to say. We didn't really know how to process that information as first time new parents. We were expecting this appointment to just be very routine. We would get a date for our induction.

Anna Jaworski: Mm-hmm. 

Haley Graham: So it was just so [00:12:00] much all at once. We actually didn't tell anybody. We kept it to ourselves because, we didn't know for sure what was going on. We didn't wanna worry any of our family members. That appointment was Friday. I got called for my induction on Tuesday and she was born that Tuesday.

Anna Jaworski: Wow. I can't even imagine what those days between finding out that information and actually having a baby were like for you. 

Haley Graham: It was a lot. It's really is a double-edged sword because we fought with this idea for a while. Would it have been better if we knew right at my 20-week scan?

We don't know because the pregnancy was so uneventful. I worked up until 40 weeks pregnant. It was a very uneventful pregnancy, there was not a lot of stress. We tried to really keep that feeling until she was born and even after because we knew there was nothing [00:13:00] we could do at this point. We just wanted to stay positive for ourselves, for our family members and for our soon to be new arrival. 

Anna Jaworski: If you're like me, it was such a foreign concept. What do you mean a heart problem? It seems incongruous that a baby is going to have a heart problem. And I worked with special ed kids, but I just never really thought about it. 

Haley Graham: No. It's interesting because I agree. When you think of heart defects or, heart problems or people needing heart surgery, I think you naturally think of older people, elderly people.

Anna Jaworski: Exactly. 

Haley Graham: You don't associate that with a one week old baby. I like to consider myself somewhat informed working with children throughout my life. But I can honestly say this was the first time I've ever heard of CHD, had any acknowledgement that it even existed.

Anna Jaworski: Yeah, exactly. I think [00:14:00] even as teachers, we study child development, but I never had a class where we talked about heart defects. I had classes since I was a special ed teacher on down syndrome and cerebral palsy and a variety of different conditions.

And since I was a teacher of the deaf and hard of hearing, of course we talked about the ears and we talked about blindness and how... 

Haley Graham: mm-hmm 

Anna Jaworski: ...those can come together. But we never, ever talked about having a child with a heart condition. And now that I look back, I guarantee you I had kids in my class who had heart conditions, but I never was told about it.

Haley Graham: Exactly. And I think it's when you look at the numbers too, right? How CHD, it's the most common birth defect. 

Anna Jaworski: Mm-hmm. 

Haley Graham: Right? Yeah. 

Anna Jaworski: Why aren't we being taught about that? 

Haley Graham: It is mind boggling and not to take away from any of those other-- Right?-- Medical conditions that you mentioned. But, you look at all the funding that goes into cancer research and 

Anna Jaworski: mm-hmm.

Haley Graham: All of [00:15:00] these other medical conditions, why isn't CHD getting, that same awareness, that same, profound impact when it does have such a profound impact. It's one out of a hundred babies are born with some sort of CHD diagnosis. It's mind boggling to me. And I think that's really why I think, what you do is so important.

Anna Jaworski: Oh, thank you for saying that, and I think what you're doing is important as well. So how do you balance it? How do you balance being an advocate for the CHD community and promoting CHD awareness while you have a 2-year-old? That's so much work and you work full time! How do you do it? 

Haley Graham: We have been very fortunate that Emberly is stable and thriving and has been, for the past year. She does still take daily medication just because we know that it's not a matter of if she'll need another procedure just when. 

Anna Jaworski: Mm-hmm. 

Haley Graham: Her last procedure was done September, 2024. As of [00:16:00] right now, we're just waiting for her next appointment date. She'll have a lung perfusion scan done, followed with an appointment at the heart center.

And this involves traveling to Edmonton, to the Stollery Children's Hospital. They actually don't do any intervention here in Winnipeg. Knowing that, I try to be very intentional with my time and my energy. So during times like this where I'm not necessarily living in a fight-or-flight mode, because she is stable, I feel like I am able to do more and commit more time and to give back. However, I acknowledge at the end of the day, I have to make sure that Emberly comes first. I have to make sure my family comes first and I have to make sure that I come first. 

Anna Jaworski: Yeah. 

Haley Graham: I've learned that sometimes it is okay to slow down and take that step back when needed. I think even the smallest acts of spreading awareness and giving back can still have a really big impact.

Anna Jaworski: I absolutely agree with you. What [00:17:00] was Emberly's diagnosis? Now I'm so curious. You kept saying shadowing. I've never really heard that expression before. 

Haley Graham: Yeah, she has about five or six different things going on, actually some very common. She has an ASD, she has a VSD, her arteries were switched, her arteries were narrowed.

There was just so much going on with her little heart. She actually has, uh, diagnosis they've said is quite rare. They don't even know how many people actually have this specific diagnosis. It's called Taussig-Bing anomaly, and it's a combination of two different defects.

It's quite complex, so I'm not gonna attempt to describe it because I'm sure I'll get something anatomically incorrect. But yeah, she had a mixture of stuff going on. 

Anna Jaworski: Yeah, a lot of our kids do. My daughter also had the transposition, the coarctation, an ASD, PDA, PFO, [00:18:00] I mean this is it folks.

We have a laundry list. 

Haley Graham: Yes. Thank you. 

Anna Jaworski: So many times I wish it was just something simple, but in my daughter's case, some of the things that she had wrong kind of compensated for each other. So... 

Haley Graham: Oh, my God. Anna, you took the words out of my mouth. That was actually-- yes. One of the comments that they made to us was exactly what you just described, and it was so fascinating to us.

Right? How their bodies... Like you said, they were trying to compensate for what was going wrong. And they explained to me that the heart development happens around like four weeks of development, right? And it's extremely fascinating to me and it's intriguing, I think, to learn more.

And I love talking with other families and other heart parents and hearing their children's story because there's these similarities between each child, each family, every [00:19:00] child's story is unique and different to them. 

Anna Jaworski: Absolutely. Absolutely. So is she going to end up with a single ventricle heart like my kid, or is she gonna have all her ventricles?

Haley Graham: They 

have, right now, her LPA is entirely covered in stents. So the last time she went for a cath procedure, they actually were one step away from having to do another emergency open-heart surgery because they were having a hard time actually accessing the LPA. The surgeon had to go in an alternate route. And he had basically said if they weren't able to go in through that alternate route, she would've gone for emergency open-heart surgery, which I didn't even know was a possibility. So that now has obviously left an impression on me because we know she's gonna have to go for more caths, essentially to continue ballooning [00:20:00] those stents.

So because he was able to get into the LPA, he didn't wanna risk it. He just put a whole new stent in. So she basically, from my understanding, has three different stents that cover the entirety of her LPA. 

Anna Jaworski: Okay. So for my listeners who don't know what LPA means, that's the left pulmonary artery and that's the artery that carries blood to the lungs.

So that's really important. (You) gotta have that open. It's really important. 

Haley Graham: Yes. And that's where these lung perfusion scans come in. That's basically how they're monitoring. They check how much oxygen is that lung getting? The last time we went, it was only getting 24%. So we know it's not a matter of if she's gonna need to go, it's just a matter of when. 

Anna Jaworski: Mm-hmm. Wow. How has Emberly's fighting spirit and strength impacted your outlook on life and your family's journey? 

Haley Graham: Oh my goodness. She has [00:21:00] taught us so much. We call her the flame to our family fire because watching her fight through her surgery and her recovery, it's shifted our entire perspective on life. Not as her parents, but as individuals. The things that we used to stress about and worry about don't really hold the same weight that they used to anymore. 

Anna Jaworski: Yeah.

Haley Graham: We've learned to find joy in the simplest, smallest moments and celebrate every moment that we have together. We were at the beach the other day and I found myself tearing up because I said to myself, ' These are the moments that we prayed for,' right?

Anna Jaworski: Yes. 

Haley Graham: When we were in the hospital and when she was hooked up to all the wires and the machines and we've taken her strength and her passion for life. It reminds us to be grateful. It reminds us to live with a purpose. 

Anna Jaworski: Mm-hmm. 

Haley Graham: We cherish our family's journey so [00:22:00] much. No matter how difficult it gets, we know right that there are gonna probably be some harder days to come, as she goes through her procedures. But it's these positive, happy days that we hold onto that are gonna help us get through those hard times. She truly just inspires us to be better and to do better every day. 

Anna Jaworski: I hear you. I feel the same way about my daughter. It's amazing how humbling it is for us to learn from our children, isn't it?

Haley Graham: I truly believe, she's taught us more than we'll ever be able to do. And yeah, we wanna give them the best, we wanna give them the world, right? (Be)cause they've done that for us. 

Anna Jaworski: Mm-hmm. Absolutely. So you were saying that her surgery is in Edmonton and I have other Canadian friends who have experienced the same thing.

Haley Graham: Okay. 

Anna Jaworski: They have to travel all the way from Winnipeg to Edmonton. 

Haley Graham: Yes. 

Anna Jaworski: But she does have a team in Winnipeg as [00:23:00] well, right? 

Haley Graham: She sure does. 

Anna Jaworski: Can you tell us about the role the team in Winnipeg plays in her care and the support of your family? 

Haley Graham: Absolutely. Our medical team in Winnipeg, they're incredible.

They really have become, I like to call them our second family, from the very beginning, they've supported us emotionally, mentally, physically, logistically, right? When it comes through planning, the last thing you wanna be worrying about is traveling to a new province with your newborn baby that needs surgery.

There's so many things that are involved with that, and our team in Winnipeg, they really handled it all. They made sure that wasn't something that we had to worry about. I'll never forget the first time we met Emberly's cardiologist. She came to see us at two o'clock in the morning, the night Emberly was born.

And just for me right there, that said it all. 

Anna Jaworski: Mm-hmm. 

Haley Graham: We thought we were gonna be in the [00:24:00] hospital for a night and get to take our sweet baby girl home. She was taken away shortly after she was born. I didn't get to see her until five o'clock the next morning.

We were basically told that you need to get ready to pack your bags. Your daughter needs heart surgery and you'll be going to Edmonton for the surgery. Thankfully the nurses at the Heart Center, they handled everything. They made sure we were ready to go. It was just, those little things that meant so much to us.

All we had to worry about was Emberly and being with Emberly. And that was the most important thing. At that time, we didn't know that we were gonna be spending a month in Edmonton in a hotel across the street from the children's hospital where she was admitted. I don't think we would've survived that month if it wasn't for the support from the hospital back in Winnipeg, knowing that we could call them anytime we needed to.

HUG Message: [00:25:00] Heart to heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hug Podcast Network Hearts Unite The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community, to uplift, empower, and enrich the lives of our community members. If you would like access to free resources.

Pertaining to the CH D community, please visit our website at www congenital heart defects.com for information about CHD, the hospitals that treat children with CHD summer camps for ch HD survivors and much, much more.

Baby Hearts Press: Embark on a heartwarming odyssey with baby heart's pressure. Gateway to uplifting stories for the CHD community. Introducing the heart of a heart warrior book series. Inspiring those born with heart defect and their loved ones. Discover the heart of a mother, the heart of a father, and my brother needs an operation.

Books [00:26:00] celebrating strength, love, and familial support. Visit baby hearts press.com and be part of our loving community uplifting hearts. One story at a time.

Rejoiner: You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna at Heart to heart with anna.com. That's Anna at heart to heart with anna.com. Now back to heart. To heart with Anna.

Anna Jaworski: I have to ask one quick follow up question. 

Haley Graham: Mm-hmm. 

Anna Jaworski: So you discovered at your 41-week scan that you were going to have a baby who possibly, or even probably had a heart condition. 

Haley Graham: Correct. 

Anna Jaworski: But they don't do surgery in Winnipeg but they still allowed you to give birth to her... and for those of you who don't know... the distance from Winnipeg to Edmonton is huge. It's going from the center of [00:27:00] Canada all the way over I believe it's to the Western coast. Isn't that right? 

Haley Graham: Mm-hmm. Yeah. So it's interesting that you mentioned that. When we were in Edmonton, actually one of the nurses or it may have been one of the doctors made a comment that if they knew how complex her heart defects were or how many there were, that I would've been flown out to Edmonton to give birth.

Anna Jaworski: Okay. I was a little bit surprised. 

Haley Graham: Mm-hmm. 

Anna Jaworski: When you said that she gave birth in Winnipeg 

Haley Graham: mm-hmm. 

Anna Jaworski: It sounds like it all worked out okay. 

Haley Graham: It did. We were fortunate. 

Anna Jaworski: You were in the hospital for a month. That's a long time to be so far away from home. 

Haley Graham: It was, and we got flown out three days after she was born. So a lot of my family, a lot of her dad's family didn't even get the chance to meet her unfortunately, before we left, which was the hardest thing. I got to fly out with Emberly fortunately, but there was only room for me. So [00:28:00] Dad actually had to come out on a plane by himself, two days later. 

Anna Jaworski: Oh. 

Haley Graham: So he flew out, New Year's Eve. We got to spend New Year's Eve together in the hospital.

Anna Jaworski: Oh, yeah. Yes. We hard parents frequently spend holidays in the hospital, don't we? Holidays, anniversaries, birthdays. 

Haley Graham: You said it. Yeah. Actually the day she was discharged was our anniversary. But those anniversaries now become more special, more meaningful. 

Anna Jaworski: Yes. My husband and I celebrated our anniversary when our daughter was in the hospital... 

Haley Graham: mm-hmm. 

Anna Jaworski: ...for her third open-heart surgery and we just took a little time away. She was a teenager by that point and 

Haley Graham: mm-hmm. 

Anna Jaworski: We went to a Spaghetti Warehouse and had dinner and You're right. 

Haley Graham: Yep. 

Anna Jaworski: It's even more meaningful because... 

Haley Graham: It is. 

Anna Jaworski: ...we know how precious each and every day is.

Haley Graham: Yes. 

Anna Jaworski: What inspired you to create Embers of Love and to begin advocating for [00:29:00] CHD awareness? 

Haley Graham: Embers of Love is truly a work of heart. It's so near and dear to my heart. When Emberly was in the hospital recovering from her surgery, a family member had made the comment that she spreads Embers of Love to everyone she meets, and we could not agree more.

She was the tiniest thing, but she just left such an impression on everybody that met her, and that simple statement just stuck with me. So after her surgery was successful, her recovery was successful, we finally got to come back home. We were just overwhelmed by the support that we received during the time we were in the hospital from the time we left the hospital, and even that we still have today.

We couldn't let it go and just not acknowledge it. So we wanted to find a way to give back, to spread awareness. It was our key mission. Because we were that [00:30:00] family where we had no idea what CHD was. 

Anna Jaworski: Yeah. 

Haley Graham: We had no idea what we were in store for. It's a very isolating feeling and if we could prevent other families from having that feeling or if we could offer that support to other families, it was a no brainer. And we wanted to create something that's celebrated Emberly's journey, her story that could make a difference.

So it started small. We did handmade key chains, handmade candles. We would sell them. Any profit that we made, we would put towards a fundraising initiative or some sort of event, some effort, to give back. And it's just grown from there. The response we got has been nothing but positive.

The connections we've made has been incredibly meaningful and ultimately priceless. Now we've taken that shift. We now use our platform primarily for sharing awareness, connecting with other organizations, nonprofit organizations that have the [00:31:00] same goal and making that effort to volunteer, and give back within the local community.

Basically anything that we can sign up for that involves giving back, we jump on it. 

Anna Jaworski: That's awesome. So you sold candles and other things. What did the money go towards? 

Haley Graham: We've done a sound machine donation to the NICU, so we were able to use some of those funds to purchase sound machines.

Anna Jaworski: Cool. 

Haley Graham: Yes, and that had special connection for us just because that was one of our lifelines when Emberly was in the NICU, was the sound machine and it's, just those simple little things, right? When you're in the hospital. 

Anna Jaworski: My kid's thirty . 

Haley Graham: Okay. 

Anna Jaworski: I don't think we had sound machines back then. 

Haley Graham: Okay. It's almost like think of a white noise, but they can also play harmonious sounds, melodies. For us, it was a nice distraction from all the hospital sounds, the mumble, the jumble, the [00:32:00] beeping. It was just a nice distraction.

It calmed Emberly down when she would get upset. You can get sound machines now that actually vibrate and offer a soothing sensation to babies. We reached out to the NICU and we asked, "What is something that we can purchase to give back?" And that was one of the things that they requested.

So we were happy to be able to do that for them. 

Anna Jaworski: That is so cool. I love that. That is amazing. And parents will be benefiting from that and babies will be benefiting from that who don't even know you. And do you have a sticker on them or something to let people... 

Haley Graham: We did. 

Anna Jaworski: Oh good.

Haley Graham: So we did, we did. That was another thing that we did. We got, stickers made with our logo on them. We got button pins, I guess is the best way to describe them. So whenever we go to the hospital for an appointment or she has a follow up, we'll usually bring some with us and we'll hand them out to get our name out there, spread [00:33:00] awareness, and just get people talking about CHD and what CHD is.

We've also done bracelet sales and we've been able to donate, I wanna say close to a thousand dollars, to Circle of Hearts Family support network. 

Anna Jaworski: I love that. That's so amazing. What goals do you have for Embers of Love and your advocacy work in the coming years? Because she's gonna be getting bigger. Do you see Emberly as being part of your advocacy efforts? 

Haley Graham: I would love nothing more than Emberly to take over what I have started. Since we've started Embers of Love in 2023, we've been able to participate in over 35 initiatives over the last couple years.

That involves volunteering, fundraising, simply sharing our story on a public platform like I'm doing now with you. Looking ahead, I would love for Embers of Love to continue growing into a more established support hub for [00:34:00] CHD families in Manitoba and across North America.

I would love to connect with more families on a personal level, to offer more resources, peer mentorship, possibly partner more with the local hospitals, just to get that connection with some of the families. We have had the opportunity to connect with a couple families that the Heart Center have connected us with and just receiving that recognition from them means so much.

Long term I do hope to expand our reach and create a lasting impact, helping families feel less alone, and just getting Emberly involved, letting her know that there were so many people that supported her in her journey and giving her that opportunity to reap the benefits of feeling good about giving back.

Anna Jaworski: It really does feel good when you give back. My daughter was pretty resistant for most of her life. 

Haley Graham: Mm-hmm. Mm-hmm. 

Anna Jaworski: She didn't wanna be the poster child of [00:35:00] CHD, and I get that. 

Haley Graham: Right. 

Anna Jaworski: She really didn't want CHD to define her. 

Haley Graham: Mm-hmm. 

Anna Jaworski: But in the last few years, she wrote for one of my books. I edited The Heart of a Heart Warrior. And it's three volumes of essays and poems from adults with congenital heart defects. Because when my baby was born, like you, I didn't know that babies... 

Haley Graham: mm-hmm. 

Anna Jaworski: ...had heart defects. And the one thing I wanted more than anything was to meet somebody who had survived to adulthood, who had my daughter's condition.

Haley Graham: Oh, Anna, that's so special to hear that, because I think when you're in the thick of it, it's so hard to think about two years from now, five years from now, it's hard to think about tomorrow. 

Anna Jaworski: Yeah. 

Haley Graham: And that was the hardest thing for us, is people would make comments like, "You are gonna look back on these days. One day Emberly's gonna be running and doing these things," but when you're in the thick of it, it's hard to see that. Your daughter is my [00:36:00] age and it's so inspiring to me. 

Anna Jaworski: Yeah. 

Haley Graham: It's so inspiring to me because it means so much to me to know that my daughter Emberly has so much to look forward to and is gonna grow up and is gonna thrive and be happy and be successful.

Anna Jaworski: Yeah, it's been lovely. Since she wrote for the book and has gone through some transitions in her life. 

Haley Graham: Mm-hmm. Mm-hmm. 

Anna Jaworski: She has been reaching out to the CHD community more and more. That's heartwarming to me because Hope had so many people praying for her... 

Haley Graham: mm-hmm 

Anna Jaworski: ...and being supportive that... 

Haley Graham: mm-hmm.

Anna Jaworski: ...she'll never know all the people who were there. 

Haley Graham: Right. 

Anna Jaworski: And it really does mean a lot to see her now giving back to the heart community. So I hope Emberly will join you. It's very rewarding when your daughter joins you in advocacy efforts. 

Haley Graham: [00:37:00] I can only imagine how special it would be, Anna. You made a very good point though. I never wanna put Emberly in a position that she's not comfortable being in. And that's something I've been trying to be mindful of too. My intentions are nothing but genuine and good. But it is, I think, an important reminder, right? That there are some families, their story, they're not all positive and they're not all happy.

Some people have a really hard time sharing that. And I always really try to be mindful that, just like you and your daughter are so fortunate, and me and my daughter are so fortunate that there's so many out there, that aren't, and have a much harder journey. And I think that's the fuel behind the fire too, right?

I'm very fortunate to have my daughter, Emberly here with me and at home happy and thriving. That's one thing I wanna remind her of too. If she doesn't feel comfortable being the face of Embers of Love, I would never put her in that position. But [00:38:00] I would hope that she would just have that in her to at least want to acknowledge and give back in some way whenever she's ready. 

Anna Jaworski: Yeah. I think that we have children with heart conditions, but they're children. They're children first. 

Haley Graham: Exactly. 

Anna Jaworski: And we want them to grow up to their potential despite their heart defect. 

Haley Graham: Exactly. 

Anna Jaworski: Not focusing on it every single second.

Haley Graham: Exactly. 

Anna Jaworski: But I remember when... 

Haley Graham: Right. 

Anna Jaworski: ...My child was young, I wondered, will I ever wake up without worrying about my daughter's heart? Will there ever be a time when I go to sleep when I'm not 

Haley Graham: Yeah. 

Anna Jaworski: ...crying myself to sleep and praying to God? 

Haley Graham: Right. 

Anna Jaworski: Please, one more day. Just... 

Haley Graham: Yes. 

Anna Jaworski: ...one more day. I will tell you, Haley, it comes. There does come a time when you don't go to sleep and wake up with that the first thing on your mind. It really does happen. And... 

Haley Graham: Yeah 

Anna Jaworski: ...you look back on those days and you think, 'Wow, how did I survive that?' And you did because you had to. Your daughter needed you, [00:39:00] and you'll do it. 

Haley Graham: Yeah. When you're put in those positions, you don't really have a choice to be strong. Right? It's all you can do. But as hard as it is, those little babies, they sure make it doable. 

Anna Jaworski: Mm-hmm. You're right. Because all it takes is a smile, them holding onto your finger. And they've wrapped us around their little fingers, haven't they?

Haley Graham: They sure have. They sure have. 

Anna Jaworski: Oh my goodness, this has been so amazing. Is there anything special that's happening with Embers of Love we need to know about right now? 

Haley Graham: Honestly, we've had a very busy last year. Some of the highlights that we've had, we became a partner of life, with Canadian Blood Services. So we encourage people to become blood donors and donate blood as often as they can. We have our big family camp coming up through Circle of Hearts Family Support [00:40:00] Network, Embers of Love. We are a Foresters member. So we've received a $1,500 grant, from them that we're gonna be using to spend on snack packs, and craft kits for all of the campers at Heart Camp this summer.

We have a volunteer event, set up on July 19th where we're gonna be getting all of those kits organized and set up ready for camp. So that is keeping us busy, but we're so excited for it. 

Anna Jaworski: That is exciting. When is camp? 

Haley Graham: We do a yearly camp. It usually falls the second last week of July. We do our family camp usually from Friday to Monday. This is for families and their children under 12. So we will be taking Emberly. And then on Monday the families leave and then we do our Circle of Hearts youth camp. Youth camp is all of our heart warriors from ages [00:41:00] 12 to 18. They get to come out and camp for the week. 

Anna Jaworski: What fun! 

Haley Graham: It's amazing.

Anna Jaworski: Is this by invitation only or how can people who wanna take part in it take part in it? 

Haley Graham: It is through Circle of Hearts Family Support Network. Circle of Hearts Family Support Network serves all of the children in Manitoba that attend the Heart Center. The Heart Center sees about 6,000 patients every year.

They see, children all across Manitoba as well as some northern territories in Ontario, I believe. So any of those families are able to come to camp. 

Anna Jaworski: Wonderful. I imagine their care providers let them know, " It's time for camp!" 

Haley Graham: Exactly. Yes. So Circle of Hearts, they're really good. They have, social media, they use Facebook, they use Instagram. Usually [00:42:00] the Heart Center is our referring center where they will tell the families about Circle of Hearts. And then of course it's up to the families if they'd like to join Circle of Hearts or be notified of what's going on. Unfortunately, we don't have nearly close to 6,000 people involved in the Circle of Hearts. I would say on average Family Camp is our biggest event and we probably get about 120 families. 

Anna Jaworski: That's a lot of families to bring together. And is that just heart families? 

Haley Graham: Correct. It's amazing.

Anna Jaworski: Wow. That is amazing. 

Haley Graham: It is. It's not just amazing for the children. For the parents, Circle of Hearts has been a lifesaver for us. It's through the Circle of Hearts we've met other heart families in Manitoba that I can honestly say have become close friends to our family and it's an amazing support group.

I jumped on the opportunity to join the Board, so I've been on the Board for almost a year now, so I've been able to [00:43:00] do some fundraising through Embers of Love that support Circle of Hearts. It's a win-win for everybody-- the kids, the parents, the community. It can't get better.

Anna Jaworski: I love it. That's amazing. Thank you so much for coming on the program today, Haley, and for sharing Embers of Love and the Circle of Hearts Family Support Network. I've learned so much today. This has been awesome. 

Haley Graham: Likewise, Anna, I appreciate this so much not only for Emberly's sake, but for all of our heart warriors. They're truly so special. 

Anna Jaworski: They are.

What a journey today has been starting with a long awaited Alaskan cruise onto Podcast Movement 2025. We'll, I'll be learning and growing with an amazing team of volunteers, and through the powerful innovation of a tiny dissolvable pacemaker, offering new hope for our tiniest heart warriors. And then of course, we arrived at the heart of today's episode.

My conversation with Haley Graham, [00:44:00] her story as a heart mom, her love for Emberly Dawn, and the founding of Embers of Love remind us that even in the most fragile moments, there's strength, there's purpose, and there's the power to create lasting change. Here at Hearts Unite the Globe, we believe in that kind of change.

We are the longest-running podcast network focused on congenital heart defects, and we're powered almost entirely by volunteers. People just like you, people who care deeply and want to make a difference. We have volunteers from around the world helping us amplify voices and shine a spotlight on CHD, the number one birth defect across the globe.

Whether you have a few hours a week or just a few hours a month, we'd love to have you on our team. So if you're feeling inspired by the stories, the science, or simply the sense of community, please reach out.

You can learn more at www.heartsunitetheglobe.com or drop me a line directly. And don't forget to check the show notes [00:45:00] for links to the incredible article about the new dissolvable pacemaker and a fascinating history of the Taussig-Bing anomaly that I discovered when I was doing research for this interview.

This article is amazing and sheds light not only on the diagnosis, but on the doctors who helped bring it to the world. Thank you as always for joining me, and remember my friends, you are not alone .

Conclusion: Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to heart with Anna, with your host, Anna Jaworski can be heard at any time wherever you get your podcasts. A new episode is released [00:46:00] every Tuesday from noon Eastern time.