During CHD Awareness Month, we hear many families share stories of their journey in the heart world. The community is very tightly knit, and many families are inspired to give back and find ways to support others. This support can be as simple as posting reassuring comments on social media, or donating a gift card for gas to a family traveling for care. Many also get involved with their local support groups or hospitals.
Some families are motivated to create a new organization to address a need in their community. To celebrate CHD Month, I talked with the founders of three incredible CHD family organizations: Beats for Bella, The Heart Hero Project, and the Ethan M. Lindberg Foundation. These inspiring women share their stories of how they got started, challenges they face, and what’s been the most rewarding.
Note: This article is a bit longer than usual, but well worth the read! (~15-20 min. read time)
Brianna Tranby: Let’s start with an introduction to each of your families and organizations.
Erin Borkowski: We organized Beats for Bella in 2014, about a year after our daughter Bella was born. Our focus initially was just awareness of HLHS and sharing our story. We had so much support from the Children’s Hospital of Philadelphia (CHOP) and our families while I was pregnant and through her first year of life, so we wanted to give back by sharing her story and letting everybody else know who was interested where we were with our journey.
Today, our focus is on post-Fontan care because that’s what affects us at this point. Bella will be seven this spring and is almost four years post-Fontan. In researching the health struggles that will probably present themselves as she gets older, we felt like that was the right place for us to be and we’re passionate about helping fund research to make sure that Bella, as well as adults living with single ventricles, have the best chance at long, healthy lives. As an organization, we’ve been able to support research and the community with $220k in donations over the last six years.
Alicia McPeters: My son Liam was born in November 2017 and I started The Heart Hero Project shortly after that, so our organization is a little newer. I started it because when I was diagnosed at 20 weeks and trying to find information about HLHS, there were a lot of personal stories out there and it was really helpful to me to see the broad spectrum of everything. We’re also a CHOP family and had a lot of support, so our goal was to support HLHS families and the community. My son passed away in October 2019, so our mission now is raising funds for research.
Jessica Lindberg: We started The Ethan Lindberg Foundation in early 2015. My oldest son Ethan was born in 2005 and passed away in 2012. Our goal when we started was to address some of the gaps we saw. The financial impact of this disease is huge and no one’s doing anything about it. We’re from Illinois but went to Boston for care. There was no affordable housing and the travel and medical bills were financially ruinous for so many people we met. It’s hard to make good medical decisions when you’re in that position, so we wanted to advocate and raise the bar of how we care for families.
We started by getting two apartments in Boston where we house families getting care, and we give grants and have helped families from 44 states. We also fund music therapy because Ethan loved music and we have to have joy in our experience. And we’re now starting to do research looking at the financial impact of CHD on families and presented our initial findings at the CHOP Cardiology 2020 conference.
BT: What inspired each of you to create your organization?
Erin: When we got Bella’s diagnosis and found out that we’d need to stay close to the hospital, our families created a t-shirt fundraiser for us called “Beats for Bella.” They raised enough money for us to stay in a local hotel and close to Bella. Soon after Bella was born, I got involved in the local Mended Little Hearts chapter helping with their fundraising, and originally thought was that’s where I was going to be as a part of the community. Then after about a year, I started looking at the need for local organizations. My husband and I both have large families and a huge support system who have gotten involved, so it kind of starting growing on its own and got to a point where that became our priority after it took on a life of its own.
Jessica: My husband and I had gotten married, we were both working and I was in graduate school, and we were just going along in our lives until we got this diagnosis and it changed everything. I quit my job and school, we lived apart since my husband was working to keep insurance, we plowed through our savings. Ethan went into the hospital in May 2011, and we were in the hospital for 13 months until he died in June 2012. In that time, we lived between Boston and Children’s Hospital of Wisconsin in Milwaukee since that was our home hospital. And in the midst of that, I also gave birth to my third child so we have four boys all together now.
We experienced horribly difficult decision-making around medical care, we struggled to find affordable housing, and we went through all of this as a family and got out of it and thought “We don’t want any more families to feel the way we do right now.” There’s a lot of focus on research, which of course is important, but there’s not enough focus on families and what this journey does to them. There is a part of the human experience we are not talking enough about.
Alicia: I started the organization because something in me was telling me that I needed to do something. For some reason, I always felt like I wasn’t going to get a long time with Liam, so I think I always knew that whatever I did was going to be for other kids and not my own. So I wanted to make that journey mean something, and help other families get through the stages that we all go through.
I also felt like it was a little lonely, as a heart mom. I also have a very large family and good support system, but trying to talk to someone who didn’t understand “the lingo” at times was difficult. So sharing our story online was an outlet for me to get my thoughts and feelings out there and have others reply “I hear you” or “I also felt that way.” And then as Liam’s health declined, I wanted to share the whole process even more because I felt like it was important for me when I was diagnosed to see the whole spectrum of things that could happen, so I wanted other families to see that as well. And then of course with his passing, I think research and awareness are so important because there’s not enough funding out there, and there are so many doctors who can do so many things if they have the ability to do it.
BT: What’s been the most rewarding experience so far with your organization?
Jessica: I’ve always been so inspired by the families that we meet and by the individual stories. These are just normal people – these are your neighbors and who you’re checking out next to in Target (laughs). Life happens to them in a way that they weren’t expecting, but they’re doing it because the human spirit is so powerful. I think there’s this fallacy that people who have a sick kid are these outlier people. But we’re not! We like cute clothes, we read People magazine, we like to go get a beer – we’re normal people! So that’s one of the myths that I want to dispel. Anybody can have things happen to them, and we’re just normal people doing our best. We love helping to improve the family experience for families just like ours.
Alicia: This is only our 2nd year, but I just feel like I have this purpose to help people. For example, Christmas is my favorite holiday in the world. But I know that many families never get to spend any of their holidays at home, so our first year we posted on social media that we wanted to help make people’s holidays a little brighter and did a donation of toys. We got about 60 responses and sent out our first “Holiday Hero” boxes. A lot of families sent back photos of their heart kiddoes smiling, and it made me happy to see that I’d made someone smile. We did it again last year and plan to keep going in the future.
Erin: I feel like any time we have an event or even just a conversation with somebody, I’m always encouraged when somebody “gets it.” Like Alicia said, you have this large community of people who support you, but there’s very few people who really understand. So when somebody who wasn’t thrown into this world connects with you and believes in what you believe in, that’s what gets me every time. We have neighbors, friends and so many others who don’t need to be involved in our organization, if they believe in what we’re doing and want to know, that’s where we’re sustainable.
BT: Can you tell us about any challenges you’ve faced? Have you overcome them, and how?
Erin: I think the biggest challenge is getting people to understand that Bella’s not fixed. Her life will never be “normal.” There are things that other families worry about, but with us they’re amplified because of her heart defect. People think because she’s almost four years post-Fontan, that she’s great. And that’s the blessing and curse of CHD – she looks normal. So it’s hard for me to not get upset with people when they assume that she’s fine. And she is doing great, she’s thriving, she’s in school, and we’re truly blessed. But it’s a life, and I’m going to watch her struggle over things as the years go by. So that’s my biggest challenge, and it’s why we believe that awareness and making people “get it” is so important.
Alicia: I agree 100%, the hardest part is the personal aspect. Trying to explain the condition to someone and they say “Well, they’re gonna be ok, right?” Liam was just like Bella where if you looked at him, you never would’ve known except by the scar on his chest. But I feel like it’s a lonely world as a heart family because other people don’t understand the worry that we have 24/7. They’re concerned about their kids getting a cold – but we’re concerned that if our kid gets a cold, we’re going to end up in the hospital. So it’s important to raise awareness that there are a lot of kids who thrive and look good on the outside, but there are still a lot of parents who don’t get to bring their kids home.
It was also hard after Liam’s passing for me to get back into it, because seeing a lot of the kids online who are thriving was difficult at first. But it makes me happy now and makes me want to raise money for research even more so there are more kids like Bella and other post-Fontan kids. They have so much ahead of them, so it continues to draw a fire in me that I want to help these kids have a great life.
Jessica: From the organization side, creating an organization is like creating start-up company. I don’t say I have a job – I say I have a “lifestyle” (laughs). The Four Hearts Shop is in my finished basement, we’ve taken over our whole house to do this, and we’ve thrown ourselves as human beings into this cause. And that’s a challenge because it’s hard to have boundaries sometimes, like the times when every family needs an apartment on Sunday at 3pm. I’m learning to set those boundaries, and hopefully as we grow we’ll be able to hire more people and create a better division of labor which you don’t usually get in the beginning.
BT: What advice would you give to someone starting a new organization?
Erin: My biggest piece of advice is to find your “Why?” Because you need to know the big, deep down why, not just “I want a cure for HLHS.” It’s a hard question for people to answer and you have to give it a lot of thought. We didn’t know our “Why?” in the beginning, we just felt we needed to do something and spread awareness, fund research, and help families because people had helped us. But over the years, we’ve grown by doing some self-discovery and understanding why we do what we do. I feel very strongly that if we have this community that can come together and we can do our small part to inspire people and give them hope, then it makes all this worth it. But it’s also a lot of work. I work full and have other kids, so you’re going to be tired and you’re not going to want to do it sometimes. And you have to give yourself those breaks. But to really make an impact, I feel like you have to do some self-discovery, talk to people, collect your thoughts, and figure out why you want to dedicate yourself to this.
Alicia: I agree – find your “Why?” because it is a lot of work. If you feel that fire and feel like you have to do something, you have to put all of you into it. Because of how my journey has gone, at least for me, if I can make a difference in even one person’s life, that makes this worth it.
Jessica: I totally agree. What people sometimes forget is that this is a business. The “non-profit” label is just an IRS designation – this is a business. I have to do an audit every year, pay bills, and make financial decisions. It’s not only this “do-gooder” thing, although there’s certainly that piece to it, but you have to be business savvy.
I also think it’s important for everyone in the heart community to be willing to work together. My organization isn’t going to be innovating in the cath lab, or in D.C. lobbying for research money; that’s not our role. But we understand the people experience. As a community, we should cheer each other on as we work in our lanes and expertise. I think that’s the best way to be effective.
We would like to thank Erin, Alicia, and Jessica for the amazing work they do, and for taking the time to share their stories and experiences! You can learn more and connect with their organizations on social media:
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.