A Closer Look at the Cardiac Center Today and a Vision for the Future

A Closer Look at the Cardiac Center Today and a Vision for the Future

Parent 1: Hi. Thank you for joining us today. As a parent who feels like they're a big cheerleader for CHOP's Cardiac Center, I would like to ask you, from your perspective, why do you feel a parent of a congenital heart patient should be seeking services at the CHOP Cardiac Center?

Joseph Rossano, MD, MS, FAAP, FACC: You know, I'm, I'm incredibly biased, but there are so many great things about CHOP, you know, what stands out to me the most are the people that are there. And again, this is, I'm sure an incredibly biased view, but I don't think there is a better group of diverse, dedicated staff who's singular focus is on the care of children with heart disease then anywhere else. I was just reflecting to a friend of mine who's not in medicine and he was asking me about my job and what I love about [it], and I was thinking of this situation that happened recently where I wasn't on service. I was called by a colleague of mine who was worried about a patient of ours in the ICU and if I could come down and see him. And by the time I arrived, there were three other intensivists in the room, a couple cardiologists, a surgeon was there, nursing staff, respiratory therapists, and situation well under control, and this patient was doing well, but I could step back and look at the environment in a, you know, somewhat detached way and just see the incredible expertise that was present. The people that they are, eminent in their field. People that are here giving talks all over, but they're excellent at what they do.

They care so much about the patients, and the diversity and complimentary skills that they have, and that, on a dime, everybody would just come together -- not necessarily that was their job for the day or that task for the day -- but if needed, everybody coming together for that child and to make sure that the outcome was as good as it could possibly be.

That is a minor example of things that happen every day at CHOP and I'm just so honored and humbled to be a part of it. And I hope that's reflected in what families see and what they experience. But it really is a tremendous group of people that are there.

Parent 2: Dr. Chen, hi. Thanks for being here.

Jonathan Chen, MD: Yeah, sure.

Parent 2: So, you know, to follow up on the first question, what programs or services are unique to the Cardiac Center?

Jonathan Chen, MD: Great question. I was actually thinking that Joe's comment about expertise cannot be overemphasized. I often say to families, You want a perfect operation. There's no question about it, but the surgeons are the first two minutes on the clock.

The other 58 minutes are all these other components from bedside nursing, cardiology, ICU, nutritionist, physical therapist, child life, all these things. What pervades the Cardiac Center, like to its core, is this not just a notion of expertise, which is fantastic, but it's this constant drive to want to both study and do better and integrate new ideas.

And so one of the things that I like about, just walking through the hallways is that, I know I'm not an expert in cardiology, for example, but there's always talk of what to do better and how we do things better, and that's not always the case at hospitals. Sometimes you can get lulled into a sense of like, we do it this way because we've always done it this way, and that's just what we're gonna do.

That is not our approach. Our approach is, you know, I just saw this great article in this journal. Let's talk about whether we should think about doing that or let's do that study better. The other thing too, that happens to an extraordinary extent is that there's a lot of clinical research that goes on. And depending on what the child or baby or young adult's problem is, you may not have access to that kind of vanguard study at other places, just because there are so few study sites in some states. Or, or maybe we're running the study out of CHOP. And that access is not to be underestimated. Meaning that to be at a place in particular, the really, high complexity programs that we have, some of them aren't available anywhere else in the world.

You know I'm sure you've probably talked to the lymphatics group, but you know, that's something that there's maybe one other place in the world that's in Denmark that is doing work that's even comparable in that way. But they're not doing interventions like that. And so just to have that access is really, really unique.

Parent 2: That's great.

Nicole Snyder: So I have a question for both of you actually. The heart community, the Cardiac Center community, sees you both at events like the Spin In. Why are those events so important to the Cardiac Center?

Joseph Rossano, MD, MS, FAAP, FACC: The Spin In is a tremendous event. Two things that really stand out in my mind that make the event wonderful.

One is it allows us as physicians, nurses, you know, folks taking care of patients to connect with families in a really special way. To see our patients and their families in a, you know, in a fun environment. It's not in the hospital, it's not in clinic. That's really neat. And to be able to connect in that way is very special.

The other thing which certainly is very notable is the amount of funds that it has raised. It truly has been transformative for us. It has enabled us to support our most innovative programs and people. And we set up this fund called the Innovation Fund and we are able to support a number of very innovative research programs to get exciting things off the ground before they could get this external funding.

It's been able to us to support innovative programs. So people say, I've got a great idea of how we can support families better, how we can improve our discharge process, how we can provide better mental health services. To get these programs off the ground in ways that we just would not have been able to do without them.

So it's really just been a remarkable event for us to be a part of that it's just has been, uh, you know, very special.

Parent 2: That's great.

Jonathan Chen, MD: Yeah. And it's been really rewarding. We, this past year Spin In we took a moment to look at the last, I think it was three years worth of innovation fund projects and how many, and it's something like, I don't know, 85% of them have either blossomed into bigger programs and gotten other funding through other ways.

Or completed the project that they intended to do. And I was talking to, one of the great things about this meeting is you get to kind of just actually connect with some of the bedside nurses who you wouldn't normally. And so I was giving them a charge last night, which I said to them, we're about to put the request for applications for innovation funds, and we, yes, we fund larger basic science or clinical research, but a lot of it are small projects that are just good ideas.

And good ideas that we otherwise, would not be able to fund through hospital funds. But they're important when they are successful, which they most often are, they make a huge difference in, for example, patient family experiences we're talking about. But they also get the staff engaged to keep thinking like, what's that rock in the shoe?

Right? And the Family Advisory Council has been really helpful to kind of, corral some of those ideas. Because oftentimes the investigators, if you will, who sometimes are people who've never done research in their life but they just have a good idea. You know, this is the first seed of them to see what happens when you have a really great idea that you can see to fruition.

And so it has a lot of great ripple effects.

Nicole Snyder: Absolutely. That's wonderful. Thank you.

Julie Miller: I have one final question for both of you. We've had the privilege of being a long-term CHOP family. We've really, in our family, learned so much over the years and wanted to see what one piece of advice you might have for the families at the Cardiac Center.

Jonathan Chen, MD: One. Okay. One piece of advice. The advice I give to, it's an extrapolation of advice that I give to our trainees when they come into the system. Which is, we, for example, will have, congenital heart surgery fellows who will spend any number of, you know, usually it's one year, but it's one or two or three years.

And even the folks who are gonna be there for a while, I say to them, do not squander your time at CHOP. You have, in this case, you know, 12 months or whatever it is of training. You have access to some of the most extraordinary people, interventions, funding, research. It's all there. You just have to take advantage of it, right? And so I think if we were to sort of extrapolate that to families, just not to lose that connection to us. Because there's so much always going on. And even, you know, years later, there are things that come up that, that are just important to be part of. And so that can be families, you know. Squandering the time also is a little bit of, new families to the CHOP family also need support. And so it's not that, you know, once, if you looked at the Board of Visitors, I'd say half of those families, their child is now 30 or something, right? But they're still coming back to the Children's Hospital to like, help new families as they integrate into that system.

Julie Miller: Thank you.

Joseph Rossano, MD, MS, FAAP, FACC: One thing I tell families, especially after a new diagnosis, there's a couple things I I try to go over with them. One is that, you know, we are here for you 24 hours a day, seven days a week. If you're up in the middle of the night, we wanna be up in the middle of the night. If you see something that's concerning to you, to let us know.

You know, parents are the best observers of anybody and you know, you know your children better than I ever will or anybody ever will. And, some of the best observations and noticing like, something's not right here, has absolutely come from moms and dads, and so do what you do best.

You're a great parent to do that. If you're worried about anything, you know, let us know and we'll go from there.

Julie Miller: Well, I think it's fair to say that we'd like to express our gratitude and appreciation for everything you're doing for families every day. Thank you very much.

Joseph Rossano, MD, MS, FAAP, FACC: Thank you.

Jonathan Chen, MD: Thank you.

It's our privilege.

Parent 2: Thank you.