Drs. Kevin and Heather Shannon - phaware® interview 510

Co-Founder and Board Member, Drs. Kevin and Heather Shannon share the inspiring story of Camp del Corazon — a transformative summer camp for children with heart disease. Hear how one patient’s journey ignited a movement to create a safe, empowering space where kids can embrace their scars, form lifelong friendships, and experience the joy of camp without limits.

From the challenges of the first year to the life-changing moments that keep them going, the Shannons share how Camp del Corazon has touched countless lives and redefined what it means to live fully with a medical condition. The Shannon’s will be honored at The 22nd Camp del Corazon Gala del Sol on April 5th, 2025 at the Skirball Center.  Get your tickets or participate in the online auction here. #galadelsol #campdelcorazon #heartcamp #camplove 

Kevin Shannon, MD:
My name is Kevin Shannon. I am a pediatric cardiologist and the co-founder and medical director of Camp del Corazon, a residential summer camp for children affected by heart disease.

Heather Shannon, MD:
I am Heather Shannon. I am also known as Dr. Heather Vandeweghe. I am a pediatrician, married to Kevin Shannon. I am now retired… happily.

Kevin Shannon, MD:
I finished my pediatric cardiology fellowship in 1993, and had an interest in treating abnormal heart rhythms, something called electrophysiology at the time. It was a very new subspecialty in pediatric cardiology. My boss happened to be the person who did that, Tom Klitzner, who became Director of Pediatric Cardiology in 1995. He was an electrophysiologist and had recruited me into his program. Around the time that I was finishing my fellowship, Tom had asked me to see a patient for him, and it was this patient who triggered the start of Camp del Corazon.

It was a young man who had a fairly common valve abnormality, his version of it was fairly severe. He had deteriorated fairly rapidly from the age of about five to the age of about eight. At age five, he was pretty normal, played soccer, ran around, was in normal school. By age about eight, he had dropped out of school because he was so fatigued with any kind of exertion. He'd reached a point where he was being carried from his home to the car to go places. His doctor, at the time, was very old school and didn't believe in heart replacement therapy for children, because just a decade prior, the survival of that was very poor. He allowed this young man to get very limited, to the point that he developed arrhythmias. He got referred to my boss, who asked me to see him.

I saw this young man and my first impression was, this is a bad valve and we're not going to make any progress in him until we fix the valve. But the parents clearly were resistant to that. So, we focused instead on the arrhythmia. We did a procedure called an ablation, where we eliminated his arrhythmia, where he happened to meet Lisa Knight, who was what we called the “arrhythmia nurse” at the time. She scheduled all of our procedures and then assisted with them.

He did a little bit better with the arrhythmia. I saw him several times, and eventually convinced the parents he should have heart surgery and get this valve replaced. I had them meet with the surgeon and they finally agreed. He was in and out of the hospital in a week. He just flew through the surgery, because his heart was so much better having a functioning valve that the fact that he'd needed heart surgery and been on bypass was of no consequence to him.

Then, every time I saw him after that, the parents were like, "Oh my gosh, he can do this now. Oh my gosh, he did this now." He had his surgery in January of 1994, and then in September of '94, he was back in school. He was playing soccer and was doing great. I'd literally been seeing him every few weeks, because I didn't have that many patients, and I was very worried about him. But then, come September, he was doing really well, so I didn't see him for a while.

I saw him for his one-year follow-up in January. I went to listen to him and he wouldn't take his shirt off. Instead, he pulled his arms inside and just held the shirt out so I could reach up underneath and listen to him. I asked him, "Are you doing that because you're self-conscious about your scar?" Before he could answer, his mother said, "I haven't seen his scar since he was well enough to put his own shirt on." So, his own mother hadn't seen this scar in months. I asked, "Is that because kids at school tease you?" He said, "No, no one at school has ever seen it except my best friend, and he begged me to show it to him." I said, "So how did you change your clothes at school?" He proceeded to show me how he could change his clothes by putting one shirt on over the shirt he had and then pulling the previous shirt out through the neck hole, never exposing his chest.

As I watched him go through this contortion to do this, I was kind of devastated, because I thought I'd done so much for this child and made him so normal. What I really did is I gave him a different problem that he saw every single day in the mirror and was just afraid to show anybody else, including his mother. That was a very discouraging event for me, because I was so proud of myself up until then, and then I realized, hey, I didn't make this child as normal as I thought.

Around that time, I got an email from a listserv. Emails were brand new in 1993, and I had just signed up for this thing called PediHeart, where you would get email blasts from people who posted on it. I got this post from someone about a camp in Louisiana called Camp Bon Coeur. A lot of people responded to the post about how great the program was and how much it helped kids feel better about their scars. Most of the talk was about kids who get to see other kids with scars, they feel better about it. I wrote away for information. I set everything up for this kid to go to this camp. I had the local Mended Hearts to sponsor him, I had the application, I had everything all lined up, all I had to do was get the mother to fill it out and we would be on our way.

They came to see me around April of that year, I had a big packet of stuff. I brought it to clinic and I was going to give it to them. I explained what it was and where it was, and the mother looked at me and she's like, "Louisiana's 1,500 miles from here!" There was no way she was going to send this child, who a year earlier, she'd been carrying from the car to the house. There was no way she'd let him go to Louisiana for a week. So, they didn't have any interest in it, didn't want any of the stuff. So, I had all this stuff and I brought it back to my office and put it on my desk. Lisa Knight saw it there when she came in to talk about scheduling patients, and I explained to her why I had it.

She had a relationship with the people who own Catalina Island Camps, or the people who ran it. She looked at me and she said, "We can do that," and she picked up the phone. She called Tom and Maria Horner, who were the directors of Catalina Island Camps at the time, and told them we wanted to start a summer camp for children with heart disease, what did they think. They needed a community service component for their lease on Catalina. So, they were like, "Oh, yeah, we can do that. Let's do it over Labor Day," which was Labor Day of 1995. So, in April of '95, we were Camp Directors planning to go to the island in August. That was the start of what was a much more complicated process than I thought.

But the short version is we were able to raise money asking vendors and people who sold products to the hospital, in particular, cardioplegia, because one of the surgeons got involved. We raised $15,000 and we arranged to take a boat to Catalina Island, use their site for three days, and then take it back. We recruited kids by going through the database at UCLA and finding children who were still alive and who definitely had heart disease, because I didn't want to invite anybody who'd lost a child and I didn't want to invite anybody who'd been told their child doesn't have a heart condition.

The thing I remember most about that process was when we wrote the letter inviting people, we said, "There are two equally important goals of this program. The first is to allow children with heart conditions to experience something that other children take for granted, a residential summer camp experience. The second is to allow children with heart conditions to interact with peers, children who have the same experiences and concerns that they do." That was the birth of Camp del Corazon.

Heather Shannon, MD:
When he came home from work and mentioned this, I was just over six months pregnant and had a one and a half year old. I was like a deer in the headlights and said, "Sure, whatever." My father had started summer camps, mainly so he knew exactly where his children were going when I was younger, so I was not unfamiliar with being part of a family that started a camp and were Camp Directors, but really had no idea that we were stepping into such a lifelong process.

The best part about it was that we were going to a campsite that was willing to support us in the sense that they kept all their counselors to do the activities, so we didn't have to find counselors, which was huge that first year. Basically, our job was just to raise enough money and then get the children from UCLA Medical Center on a bus to the dock, get them on the boat, get them through the boat ride to get to Catalina Island. Once there, the Directors of Catalina Island Camps pretty much took over and did a lot of the legwork. Those three months, four months, that we worked on it didn't seem that hard. Lisa Knight did most of the recruiting of campers and getting the information she needed, which, at the time, was a lot less than what we were require now. We obviously didn't realize the amount of work it takes to deliver all the medications for these kids through a three-day stay on the island, but we learned very, very quickly.

Kevin Shannon, MD:
There’s lots of serendipity with camp. The biggest one was obviously the first year, we had a site willing to give us staff, who knew how to do all the things that counselors have to do. To be honest, Tom and Maria Horner, every time we'd sit down and talk to them about philosophies of child raising and discipline and running camps and things, we are spot on on the exact same page with everything. Having them as partners in this was huge.

The first year, we had no idea what we were getting into, to be honest. We knew we needed to make this safe. We had as much medical information as we could possibly gather about these kids. We actually took any medical person that was willing to come. We said, "Fine." We told them they could bring their kids, because at the end of the day, we only had 49 campers who got on the boat. We only had 84 who filled out applications. We knew we needed more than that number to have momentum in groups of kids. So, we let any staff that wanted to come with their kids that were in the age range. We put them in cabins with these other kids the first year.

It was kind of a whirlwind from we'd get them all on the bus, we had to drive to Newport Harbor, because the only boat we could get was a charter out of Newport Harbor. We had to carry all the luggage three blocks from the bus. Then, that was '95, there was a hurricane off Hawaii, but it was sending 15-foot swells all the way to Santa Monica Beach, so we rode out in these huge swells and almost everybody got seasick. So, we got through those three days. Those are really, in all honesty, still a blur in my mind. My most silly memory is I remember wandering around between cabins late at night after everybody had gone to bed just listening to see if anybody was seizing, because I had in my brain, if anybody had a problem, the first thing they would do is seize and make noise. I don't know why. But nobody ever has had a problem at night, knock on wood.

Heather Shannon, MD:
After the first year, many friends of Lisa Knight came on as counselors. We realized that we had to start having our own counselors. The first year, which would've been the second year of camp, finding enough people was a little bit of a struggle. Catalina Islands Camps gave us some more staff, and we mustered through. Then, once word got out about their experiences, these counselors, we became inundated with people who wanted to be counselors at this camp. Counselors of other camps that had ended by Labor Day, they wanted to come. They wanted to be a part of it. It just flourished to the point where we started to have to have a real application process and a waiting list for counselors, and that has continued to this day.

Fortunately, after about 10 years of camp, a lot of the campers grew to an age, because we require them to be over 20, where they could be counselors. That was a whole other process and place to get counselors. We've enjoyed that tremendously, to see these children grow up and become great people and do great things, which normally we envision them thinking that they can't do anything. Then, they come back and are counselors and such great support systems. So now, probably about 30% or 40% of our counselors are former campers of some sort.

Kevin Shannon, MD:
I've had many parents tell me, "The hardest thing I've ever done is watch my child get on that boat." Then they say, "But after they got back, I knew it was worth it." For parents, it's hard because this is a child that they've seen go through surgeries, that they've slept in the hospital at the bedside, that they've gotten permission slips and paperwork to the schools and not really let them out of their sight for very long. For about 70% of our campers, their first night at camp is their first night with anybody but a relative.

So, it's a pretty big ask, and I tell our counselors all the time, the thing we market isn't a summer camp, it's trust. We ask these parents to give us their most prized possession, who's 1,000 times more fragile than anybody else's most prized possession, for four nights and five days, and to make sure that not only are they getting their medicine and they're being watched carefully, but that if something goes wrong, we're prepared. That's really what we want to let people know or feel. We don't market it in the sense we don't tell anybody that, but we try and give that impression and make sure people know that we do training. We find out as much as we need to know about their children. We have emergency action plans. What we want them to know really is their child's going to come and have a summer camp experience, it's not going to be about their heart disease.

Heather Shannon, MD:
As all children are, they're very conscientious about the scars and the marks and such, partly because I think it brings back memories of what they went through getting those scars. But we found at camp, there is no hiding scars. After about an hour or two, there are scar contests, there's by number how many scars you have, who has the worst scar, who has the biggest scar, et cetera, et cetera. Now, they enjoy that with the other counselors who have been campers prior. I think that they don't stare at each other's scars, because they are used to seeing those scars and such. It makes them feel very comfortable that they can be around other children and see that other people have these scars. I think many of these children think they're the only one in the world that has this scar and they haven't seen anybody else with it. That just puts them part of the group and children want to belong. I think the scar becomes a fairly large component of this whole process at camp.

Kevin Shannon, MD:
The first three days of camp were a whirlwind for me, I don't remember doing anything. I know I kayaked, I know I helped kids in and out of kayaks. I know that I had been a lifeguard. We had lifeguards, but I was on the waterfront a lot. I was wandering around a lot, just checking on things. We come back and I was exhausted. We got all the kids back to their parents. We, of course, had one child that the parents were four hours late. So, finally got him off with his parents, go home, get some sleep, and then Tuesday morning, I went back to work.  

I remember very distinctly, I got a call from a mom, she says, "Dr. Shannon, I just had to call and tell you that you wouldn't believe Carly when she came back! You brought back a different child. She was so excited about her heart disease and so excited about her scar and so excited about all the things she got to do. We can't wait for next year!" That was the first time it dawned on me that we were going to have to do this again.

That kind of enthusiasm for “you brought back a different child,” really struck me. The next event like that I recall is I got an email from the mother of one of my patients. It was a very long, well-written email. It basically said, "Dear Dr. Shannon, I just want to let you know this summer camp was amazing. We sent you a child who was ashamed of his heart disease, who looked at the ground all of the time, who didn't see a future, didn't look forward to a future. You brought back a child who held his head up high, who is proud of what he's been through, who really saw a future and an exciting one. We can't thank you enough for doing that for our child. It's something we never could have done."

That has been the raison d'etre of camp, is to have that kind of transformative change on children. There's lots of benefits to summer camps Even children without special conditions benefit from them. The biggest one probably being the friends that you make. For a lot of these kids, they feel a little bit outcast or so different from other children. They don't make friends easily, but they come to camp and they make friends that they then keep in touch with the rest of the year and they look forward to seeing every year when they come back.

Heather Shannon, MD:
I remember the first year, Kevin running to the ATM machine to get money out of our account to pay for the bus. I remember the buffalo walking through camp and everybody going, "Well, what do we do with a buffalo in camp? How do we get rid of it? It's awfully big." I'll have to say, most recently, the hurricane that came through, there was lots of parents very frightened about that, but we had a great time on the island. Rained a little bit, there were water streams and mud everywhere. We had an extra day on camp, so we had to come up with an activity for that rainy day and the counselors did the most amazing thing and I would say one of the best days at camp we had with the kids.

The counselors are amazing. They make things happen. There's just been so many magical moments, things that we do every year, disco bingo. It's just something that is loved by everybody. We used to do something called a snipe hunt with the little kids, where they went out in the evening and we usually had Kevin and some other leadership were out there with two flashlights with red over the ends of it like the eyes of these little monsters. The kids would be screaming and such. Every year, there's always something special and fun to watch.

Kevin Shannon, MD:
From the very start, we had this recognition that if you have a child with heart disease, regardless of your financial situation, it's a huge burden. For many families, the vast majority, it's a huge financial burden. Even if you have insurance that covers all the medical costs, there's lost days at work, there's extra travel, there's nights in hotels, there's copays, there's all kinds of expenses and loss of income associated with it. The last thing we wanted to do is create any kind of financial burden for these parents, so from the get-go, it was free.

The model for Camp Bon Coeur was you would get local Mended Hearts organizations to sponsor it, which for one kid, $1,500, our local Mended Hearts could do that pretty easily. $15,000 was a bit much, so they stuck to their $1,500 contribution, originally. From the very get-go, raising money was literally one-third of what we had to do to get these kids to have this experience. It's hard to tell people, "Oh, hey, we want you to give us money so we can take these kids to have a great time." The message we want to give them is we're not just letting these kids go to summer camp, we're helping these kids deal with a lifelong problem that they have, and are going to have, and trying to optimize the outcome for these kids, give them self-esteem and confidence to go forward in life with a positive outlook. We have to sell the impact of camp, which sometimes is easy, sometimes it's harder for people to see, but it is truly transformative for these children.

One of the things I tell donors all the time is we're very frugal. 99% of our staff are volunteers. We have over 350 people who volunteer for us throughout the year in our various programs, usually about 240 who help us run the summer camp program, and part of that is what it takes... We have a whole cadre of medical personnel that you don't need at summer camps that aren't special needs. Plus, we have a higher ratio of staff to children than most places, because we want to make sure that we are able to respond to problems. We staff for worst case scenario. Fortunately, most of our staffing is volunteer.

The fundraising though has gone through this process, where the first year we did it, we didn't have any kind of insurance, nobody was getting paid, the campsite was donated. The only thing we paid for the first year was food. Since then, as we've gotten more organized and larger and need more time on the island, more resources, our expenses have gone up. We actually know that the cost per camper has gone up to about $2,500 per camper per session, so it's not cheap, but that's what you would pay for a lot of summer camps for a week anyway. If we're taking 130 children per session for three sessions, that's almost 400 children, that's pretty expensive.

The process though for raising money is most of it comes from individuals, small corporate donations, things like that. We don't accept money from any kind of government programs. We're proud of the fact that we're a grassroots organization, that most of the people who donate to us know exactly what we do and why we do that and see the impact that we have. They agree with us that it's an important thing and it's worth doing and it's worth spending money on.

The Gala del Sol grew out of American Heart Association events that they used to help support us. It's really our way of showcasing what we do and making sure that all our donors have a chance to see what we do. We honor someone at our galas. We try and make it someone who's significantly attributed, not necessarily to camp, but to the lives of children with heart conditions.

This year, they're honoring Heather and I, partly because it's 30 years, partly because we didn't get the chance to honor Lisa before she passed away. Losing Lisa Knight was a huge loss. Looking back and seeing that we honored her posthumously was challenging. So, the Gala is our way of showcasing what we do and making sure that everybody gets to see what we do in a fun environment. We also try and streamline it, mostly show videos and not have speeches so people get a real taste for who the person is we're honoring, and also what it is we do at camp and how that benefits children.

Heather Shannon, MD:
The Gala is a very fun event where everyone dresses up. It moves very quickly and it's a lot of fun. Tom Arnold has been very involved, he does this all gratis for us. Most of our entertainment is gratis. I think one of the most important things we are proud of is this is operated like a mom-and-pop organization, no money is wasted. We have three employees. All the doctors, all the nurses, all the counselors, volunteer their time. The money that is spent is spent on the boat ride getting the children over to Camp del Corazon, on the camp site that we now have to rent, which we didn't have to do the first five years or so, and the food. It's really just all spent on the kids. There is some insurance that we have to do, but we're very careful about every penny that we spend.

Kevin Shannon, MD:
The 22nd Camp del Corazon Gala del Sol will be on April 5th, 2025 at the Skirball Center. We're really looking forward to having another great event and to helping as many children as we can. You can get tickets for the Gala by going to the camp website, www.campdelcorazon.org, and clicking on the link to the Gala del Sol. I'm Kevin Shannon…

Heather Shannon, MD:
I'm Heather Shannon…

Kevin Shannon, MD:
And we're aware that our campers are rare.

PH Kiddos 7-17: Applications for Camp are open! Apply here. (Be sure to note Lucas Van Wormer in the application!)

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