Episode #129

Finding Purpose in Adversity: Hearts 4 Henry

With Hailey Witzel
President at Hearts 4 Henry
March 21, 2022

Anthony sits down with Hailey Witzel, President of Hearts 4 Henry. At 20 weeks, Hailey and her husband Barret, a Service Supervisor at Integris, learned their son Henry would be born with a complex and rare congenital heart defect (CHD). Following Henry’s successful heart transplant at 10 months old, Hailey found purpose in raising awareness of CHD and helping other families.

The First Annual Hearts 4 Henry Golf Tournament is sold out, but tickets for the Silent Auction and dinner are still available! H4H also has a wide range of branded apparel for all ages.

Check out the transcript below and listen along with the embed, Spotify, Apple Podcasts, or your favorite podcast app.

Transcript

Introduction

Anthony DeGraw: Welcome to another episode of The Helpdesk today. I have a very interesting guest and we’re not talking about tech. We’re not talking about cybersecurity. We are talking about Hearts 4 Henry. So today I have Hailey Witzel. She is the President of the Hearts 4 Henry foundation. Hailey. Welcome to the show.

Hailey Witzel: Thank you so much for having me.

Anthony DeGraw: Absolutely. So Hailey, if you can just jump right into this, I have a feeling we’re going to go for a little while here. Can you give us the story and the background around the Hearts 4 Henry Foundation?

Hailey Witzel: Yeah, of course. So Hearts 4 Henry was founded in 2020. So my husband Barrett and I have a little 15 month old now, but his name is Henry. He was diagnosed with what’s called hypoplastic left heart syndrome. So essentially what it means is he was born without half of his heart.

And so for us, we went through a lot of trying times and Henry had five open heart surgeries in the last year. And we had to relocate our family to Milwaukee, Wisconsin for it and all of his care. And he had a heart transplant successfully in October. And with that, blossomed into this idea of, how can we help others? Because Barrett and I and Henry are so blessed with the support from, not only Integris, but you know, our family, our friends, we didn’t ever have to worry about financials.

And so when we got through the thick of it with Henry, we really wanted to do something to give back. And that’s where Hearts 4 Henry really started.

What is CHD?

Anthony DeGraw: Awesome. And can you explain to the broader audience, because you really enlightened me on our first call, our prep call, of what is CHD?

Hailey Witzel: Yeah. So CHD is a really broad thing. My son has one small percentage of what CHD is. And so CHD stands for congenital heart defects and it affects one in 100 babies. Every single year there’s, I think the statistic is over 20,000 live births, that some child is born with some form of a CHD, and that can vary.

It can be a hole in the heart that eventually heals itself to things that like my son had, which is hypoplastic left heart syndrome, it requires multiple surgeries if they survive that first year of life. I was meeting with moms last night, which is a great example, and we all have sons that had different CHD’s there’s so many of them. And then my best friend gave birth to a son earlier this year that had a CHD that was totally different from Henry. So you meet different people that have different stories that all the severity varies. And so that’s why congenital heart defects are so common. And that’s why it’s so important to get the word out because you really don’t hear about it.

Anthony DeGraw: I was mentioning to you. I have two kids and I didn’t hear about it. I’ve heard about –

Hailey Witzel: Right?

Anthony DeGraw: Premature. Like a family has premature babies, premature twins, all this kind of stuff, but I never heard about it. And you and I had talked a little bit about childhood cancers and all the messaging and stuff that’s out there and it used to be sticking somewhat behind the scenes and not in a good way. This also needs to get out there as well.

Hailey Witzel: Childhood cancer is also very important and it’s something you always hear about. And it’s so devastating. And I think for, moms and families like me, that we’re just trying to get the word out that cancer is a big deal, but CHD is so much more common and it happens at birth and it’s one of those things that kids live lifelong. And you would never know unless you saw their scars. The driving factor of this is let’s raise awareness and talk about it. You hear people talking about other things you’d never hear anybody talk about these defects, these kids have.

Anthony DeGraw: Yeah, absolutely. If you don’t mind and you go deep as you want on this, because it is personal, but you had mentioned that Barrett and yourself, you were traveling, you had to move, if you can touch on some of those parts of that story of what you personally went through as a mom as well as what happened after Henry was born that the family took on.

Hailey’s Story

Hailey Witzel: Yeah, of course. Henry is my first kid. So for me, I was a 20 something year old and I found out I was pregnant and I was on like the highest highs of my life, you know, I had just gotten married. We had just bought our first house together. I had a great job. My husband Barrett has a great job, obviously still does.

Life was going our way. Our family was starting and it was a very exciting time. And everything seemed to be going really well. Baby was growing well. And because of COVID, I went into my 20 week anatomy scan by myself.

And that’s one, hard just because you want your husband to see their child too. And so doing that alone was really hard. But then when you see that something’s just not right and they don’t want to tell you, that’s probably even harder for us. And so I remember the doctor looking at me and saying they didn’t get a good enough picture of Henry’s aorta and his heart.

And they said they wanted to refer me to another clinic that could do a deeper ultrasound. So a week later we went and saw this other ultrasound tech. She was such a nice person. She’d been doing it for so long. And I just remember laying there and she looked at me, she knew what we were about to go through, but couldn’t tell me.

And so then they pulled us into a room and it was two hours and I really have blocked it out what happened, but all I remember hearing the doctor say was, “Your son’s going to be born without the left side of his heart. He may not survive to the day he’s born.” And he went three options. And so for Henry, he has what’s called a critical CHD.

And so his severity on the list of all the CHDs you can have, he’s in the top five. And more than 60% of people terminate these babies because of the severity and their chances of living are very low. And then also the cost of it, right? Who knows what it was going to cost. So we took about 10 weeks before we really shared anything with others.

We told our family, we told some really close friends and we digested it. We took it in, we had a couple of weeks to make a decision. We obviously made the decision to have Henry and I could not live with myself if I didn’t give my son the fighting chance to prove to us that, you know what I want to be on this earth and I deserve to live. And so that was the decision that Barrett and I made. And thank God for it because the kid’s a fighter.

So Henry was born November 19th, 2020 after a very long labor and traumatic birth. He was wheeled away to the NICU where he was hooked up to medications to save his life and keep him alive. I didn’t meet Henry for about three and a half, four hours after my C-section, which for any mom, the first moment you have a child and they lay them on your chest.

I never got that. That was taken away from me. And that was the first time that I realized like my life and being a mom is going to be so different. And so our lives changed pretty drastically. The hospital that we were at did great things for our son right away. And they’re phenomenal people.

Unfortunately, for Henry, he had so many complications after his first planned surgery. It resulted in his heart failing so bad. He was on life support. He almost died three times there and then they sat us down and just said, here’s the deal. We don’t have a transplant program right now. We can’t accept a heart for him to transplant and to save his life.

If he survives the flight to another facility, do you guys want to go and have somebody else list him for heart transplant? And we were like, absolutely. Like, where do we need to go? And so we looked at a bunch of facilities around the country. We actually got denied by a few facilities, which was super discouraging.

They said that Henry was too sick. He was too complex. Basically, they didn’t want to risk their statistics to try to save his life. So Wisconsin Children’s, which is where we live now, which is in Milwaukee, Wisconsin. Their director of transplant here Dr. Kendall, big shout out to this guy, took us on and brought us in June of last year.

And thank God. And he listed Henry within a week of him being here. He battled septic shock. He battled a really bad procedure that was supposed to be an hour. It lasted 18 because he started to bleed out. He landed himself back on life support. He’s had a breathing tube in for about four and a half months. He waited 116 days and we finally got the call on October 4th that a donor heart had been accepted.

And it, it brings me chills every time because I think I was at peace with the fact that whatever was going to be with my son was going to be, whether that meant he passes away or he sits here and fights. And every time he would go through his stroke and the big surgery that was really bad and life support the first time, the second time.

And he come back out and they would be like, we don’t know what he’s going to look like. We don’t know what’s going to happen, will he wake up from this stroke? And he would come back out of it and just be like, I’m good. Like, he would act like nothing happened. Like he didn’t get knocked out or you didn’t have a stroke or any.

And so for me, it was like this, he’s going to be fine. Like all of a sudden, it just clicked with me that I’ve got this kid that is a fighter and is defying all these odds that are stacked up against him and was like, you know what, no, I’m not going to die. I’m going to make it. It’s going to be fine.

We’re going to make a difference in this world. So all that said and done. Had his heart transplant on October 4th, the most nerve wracking day of my life. I am so grateful for that family that made the selfless decision in their tragedy to shed hope and light in my life and save my son. I can never repay them for that.

And yes, my son was born with a CHD. Yes, he had a heart transplant. He’s not fixed. He will need another heart transplant in his life. He always will have an uphill battle with, fighting rejection. And it’s just a different tier of CHD.

And so for Barrett and I, especially, yes, we’ve had to relocate. We have an apartment here in Milwaukee, we have a home that we’re trying to rent out, things like that, but I’m grateful. We have so much support. We have so much love, people are like, what can we do to help? They’ve stepped up. They take care of our house.

Integris has been phenomenal for my husband to be able to travel back and forth, to be here for us, but to also be at work. So we’re just, we’re blessed. We’re thankful. There’s not enough words that I can say that would express my gratitude for, even though we’ve been through. How much I’ve changed, but how much grace I’ve seen from others.

Anthony DeGraw: Yeah. Wow. The perspective that you have is outstanding. So you go through this entire situation and you guys, as a family are working through that. And in that process, you’re thinking back about CHD. The knowledge isn’t there. How come I’m just finding out about that? So you formed the foundation. The question I have for you is like, what drove the reason for the foundation? Specifically, you know, why did Hailey like, I’m going to be the president of this foundation, we’re going to create this?

Creating the foundation

Hailey Witzel: It’s a great question. I had a great job.

I was working and I loved what I did. I lost my job when I was pregnant with Henry due to COVID. And that was heart wrenching for our family, because what do you do? COVID was already hard and then you go and lose your job out of nowhere. And so I just decided I’m going to take my time, have Henry. And then once my maternity leave is done, I’ll start looking for work again. And so I knew I wanted to do a foundation on the side. I knew that was something I wanted to do, but I also was like I need to find a job. And then as things got complicated with Henry, I said, I don’t really want to go back to work.

And my husband really supported me with that. We just had to make some changes and save a little bit better and realize that maybe we can’t go on a vacation, whatever. And it made some minor tweaks in our financial situation to be smart about it so that I could stay home full-time with Henry.

But then also I wanted to make a difference. Being a stay-at-home mom is no joke, being a stay at home heart mom is no joke. How can I make an impact for moms and dads and whoever that don’t maybe have the opportunity to stay home like I do?

And so for me, that’s where this all stemmed from was, I’m going to put a lot of my time into being a mom, but also be the president of a foundation that changes people’s lives and supports people and listening to families. How can I support families? Like I was supported if it’s handing them a check to pay for their mortgage for a few months, or for them to stay at a apartment across the street from the hospital where their son is having surgery, a hotel, whatever it is, I want to make that difference in the world and do that. Cause that’s my purpose. I think that’s the reason Henry’s here is to teach me, and to teach everybody that you can give back and make a huge difference for people to learn more about CHD, and drive the knowledge and the education around it.

Anthony DeGraw: Absolutely. And the foundation, as I know, it has already has live examples of things that you all have already been able to do to help families. You want to run through a few of those that you guys have done so far?

Helping families

Hailey Witzel: Yeah. It’s amazing. We haven’t even had our first event yet, which is coming up in June of this year. We’ve been selling t-shirts and candles and really just like getting donations from people. And we love it because we walk of the hospital and you see all your nurses and your doctors wearing your Hearts 4 Henry gear.

And we all have it, obviously, and our friends support it. And so we drove money from that. We have a partnership with Heart2Heart Coffee, where you can buy coffee and that’s what drove all these donations. We had this lump sum of cash and we started to get inquiries about families. And so some examples that I have that we’ve done so far is when we were on the critical care unit here in Wisconsin with Henry and we were still waiting for a heart transplant.

I had heard about this family that had a daughter who had a heart issue. She also had lung issues. And they had a home that didn’t have proper ventilation in their home. So to bring her home would be super unsafe. And so they were trying to pile together money. Both of them are on leave from their jobs.

They don’t have the funds to be able to bring their daughter home safely. So Hearts 4 Henry funded for them to get an air purifier system and a new furnace and a new air conditioning system so that their daughter could go home safely. And she went home and she’s healthy and she’s thriving. And so that was one example.

And then another example is we gave back to a family in January. That’s actually very near and dear to my heart. A very close friend of mine from high school had a son who had a CHD, which is crazy, like the chances that her and I would end up being heart moms together. They live a little further out. And they didn’t want to be very far from their son during surgery.

So we paid for them to stay in an apartment that you could rent, like a Vrbo for 10 days so that they could be close to their son and be at his beck and call at any time. That way they didn’t have to sleep at the CVICU. They didn’t have to hear the noises. They could walk over there whenever they needed to. So that was great for us to be able to give them, any support we could.

And then most recently, which this one, it expands so far beyond what do, right? Yes. Both of those kids that we’ve supported so far are living and thriving and doing grateful their home.

And then recently we’re starting to select families for our golf event this summer that we’re going to donate the proceeds to. And we have a couple right now in the process of getting this family on our list, and their daughter unexpectedly died and it’s a family here in Wisconsin.

And she had emailed us and basically told us, thank you so much for your consideration. She passed away. And thank you, basically thinking that we weren’t going to give her money. It doesn’t matter to me if your kid’s alive or they ended up passing. We wrote a check to pay for her funeral costs because at any point in time for if I would have lost my son, I know how expensive it is to bury anybody, but then to bury a child.

And so if I could bring peace to her and her other children and her family, to just not worry about it. That’s all I wanted to do. And I said, you can use this for the funeral, or you can use this for a memorial. Does not matter. I don’t need to know, but here, and if that helps you, that’s all I care about. I don’t need to know exactly what happened. So those are some really great examples and we have some great families that we’re going to support this summer. One is, you know, she’s got a five-year-old and a really young kid that’s got a CHD and it’s been a really rough road for them, from a financial standpoint.

And so they went to a lot of debt. They had to sell their house, all these things. So it will be donated to them this summer, along with a few other families that we’ve met and we’re excited to drive this whole thing and give them, something, some level of support.

Anthony DeGraw: Yeah, absolutely.

So let’s talk about a couple of the examples. I know there’s two specifically that we wanted to touch on. One you already gave a little insight into which is the clothing, the shirts and stuff like that. I also, I’m picking up on something that you said previously in our first conversation, and you said it again to hear is, heart moms.

“Heart moms”

Anthony DeGraw: And I feel like there’s like a community. There’s definitely a community I can tell, talk to me about what, just even the word heart mom means to you.

Hailey Witzel: You know, it’s really funny. I had dinner last night with two fellow heart moms that both their children have passed away, but they are phenomenal women and it was a lot of laughter.

And so I think we always joke, there’s a difference between when you’re a mom, but then you’re a heart mom. And nobody messes with a heart mom because you, you see some stuff that no other mom would ever see. You have a different perspective on what it’s like to have a child.

There are so many things we always used to joke when I was in the hospital. Henry’s cardiologists would come in and just be like, have we gotten you your badge yet to work here? So you can just like sign in? Because at some point you just become so knowledgeable to your son’s condition, to the medication that they use, to you’re involved in rounds. I specifically remember a time where one of the doctors was grilling a resident and she couldn’t get it right. And she was just getting nervous. And I was like trying to mouth her the answer because I’m like, I’m his mom. I know.

It’s my child. I know what’s best. And like I said, nobody ever messed with a heart mom. There’s times I’ve stopped people from doing anything to give my son a minute because I know him and I will do anything to protect him.

And I will advocate for him since he can’t talk. But what an honor it is and what a great community I am a part of not only me, but I have met some amazing men and women that are in the same position and so cool. We amp each other up, we support each other, we get it, like we fight together.

And so that’s the coolest part about this. As I found this whole community of things that like, I didn’t know about CHD, until I found out when I was pregnant, I didn’t know there was this whole community of just sweet people that are like literally killing it and taking names. It’s a crazy to me that this is out there, but how phenomenal and what an honor it is to have that title.

Anthony DeGraw: Awesome. I was picking up on that. I was like, I got to ask her about this.

Fundraising and golfing

Anthony DeGraw: So we got a couple of different ways to raise money and we got coffee, apparel, and then we also got some golf coming up. So walk us through those three different ways, and how people can help Hearts 4 Henry raise money.

Hailey Witzel: Yeah. So we have a website that, we can link here obviously. We sell apparel on our website, so there’s sweatshirts, t-shirts, onesies. There’s really a ton of great gear. So you can sport that way. You can just donate. We have a partnership, like I said, with Hearts2Heart Coffee, they have great coffee.

I have it myself and it’s phenomenal. Not even a plug, I’m being dead serious. It’s probably some of the best coffee I’ve ever had. He has a kid that has a heart issue as well, so great cause, we partnered with them.

You can also purchase that on our website. And then we wanted to do something in the summer. We wanted to do a big event. I was a college golfer. Golf is very near and dear to my heart, my husband golfs now. I still beat him just so everybody knows when they’re watching this. If he lies to everybody at work, because I still beat him.

Okay. Still good. Same tees can still do it even after having a baby.

Anthony DeGraw: And our first call and there was a conversation around should Barrett be on this or not. And now I understand why you said he shouldn’t be on this, so you could get

Hailey Witzel: There you go, liar.

So, no. And uh, so we want to do a golf tournament. It’s very near and dear to me, it’s very near during my family and I want my son obviously to play too.

So we’re having a golf event. June 13th in Stillwater, Minnesota. The golf itself is actually sold out, but the silent auction and dinner event after is not. So we need more people to come and support it. We’re going to have a great silent auction. We’re still gathering baskets and stuff, things like signed memorabilia, tickets to things. We’re giving out like a trip to Cabo is one of the trips we’ve selected. It’s going to be a great night. We’re going to do a ton of fun stuff. Golf is going to be a blast. I’m really looking forward to seeing everybody there, but that’s how you guys can support.

And a hundred percent of the proceeds are going to go to families in need. Like I said we’re selecting a few families right now and their stories really ring true. We have some great speakers. I’m going to get up and talk about these wonderful families and everything they’ve been through. But again, June 13th, Hearts 4 Henry First Annual Golf Tournament, and we’re just going to keep growing it and making it bigger and better.

So really excited. I can’t wait.

Anthony DeGraw: Awesome.

I love it. So I wanted to thank you for coming on and sharing your story and to Barrett for introducing myself to you, the ability for Integris to support as well, as much as we can. It’s not easy to do this. I love your ability to persevere in all of this.

And the creation of Hearts 4 Henry is phenomenal. So we will make sure everybody that we link in the bio to hearts4henry.org, where you can go buy apparel. You can get the coffee subscriptions, and you can also take a look at the golf and what’s going on there.

So ladies and gentlemen, Hailey Witzel, President of Hearts 4 Henry.

Thank you, Hailey.

Hailey Witzel: Thank you so much.

Anthony DeGraw: See ya.

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