CHD After Childhood

CHD After Childhood

Julie Miller: Hi, I'm Julie Miller from the Family Advisory Council at the Cardiac Center, and I'm here today with Dr. Yuli Kim.

Yuli Kim, MD: Hi, thanks for having me, Julie.

Julie Miller: And Dr. Kim, can you tell us a little bit about your role in the Adult Congenital Heart Center?

Yuli Kim, MD: Yeah. So, I'm the Medical Director of the Philadelphia Adult Congenital Heart Center.

It is a joint program between CHOP, Children's Hospital of Philadelphia, and Penn Medicine. It was started in 2004 by Gary Webb who left in 2009. I came in 2010. So, I've been here for 12 years now. I'm an adult cardiologist by training with subspecialty ACHD training. I was at Boston Children's for a couple of years and I came down in 2010 to continue the program, which is this joint venture that we have between two great institutions.

Julie Miller: That's outstanding. We're a heart family and my son will be transitioning soon. He's a senior in college and we're ready to leave the nest.

Yuli Kim, MD: And are you ready?

Julie Miller: I'm ready. We've had a great partnership with our cardiologist and discussing what makes sense, but as your child gets older, maybe their legs are falling off the echo bed and they're ready to go at some point.

But tell us a little bit about some of that transition and some of the support that you have in the program for other families.

Yuli Kim, MD: Yeah, you know, I think transition, you know, we use the term kind of interchangeably with, you know, transfer or sort of leaving the pediatric care setting, but transition really starts in childhood.

And so you can do it in a developmentally appropriate way, and we have a pilot transition program starting at the age of 16. But certainly transition can start earlier than that and, you know, what we encourage our pediatric cardiology partners is to start with, you know, even addressing your child in the office, asking them, you know, what their condition is.

That's a form of transition education, which is really the process. At around 16, you know, and this is an age where kids are in high school and really starting to get their legs under them and kind of getting an understanding of who they are and forming their own self identity. And so we chose that for now.

I mean, certainly it can change, but you know, this is a ripe age to start preparing your child for what's ahead. And so it goes beyond, what's your condition? It really starts with learning how to make your own appointments, learning about refills, learning about sex, drugs, and rock and roll and behaviors and this, that, and the other.

And those are the types of educational topics that we try to touch on in terms of the transition education program. And I think that as our kids get older, you know, it's like developmental milestones, right? And they start to build on these things in such a way where they get their own independence. And I think simultaneously the parent also learns to shift, right?

So I think there's there's a lot when it comes to transition because, I think of transition, not just for our kids, but I think of it as for the family.

Julie Miller: Yeah, it is definitely going to be a big transition for our family. We've been with the same cardiologist for 21 years. She's become part of our extended family, but we also know that it's really time to move on to get the right care, at the right place and to also have that a sense of responsibility about his condition. So we're so fortunate to have this program. Do you have any advice for families who are about to transition such as our family, anything you'd want them to know about the center?

Yuli Kim, MD: Asking your cardiologist a little bit about it is one thing, not to put the onus on you on the family, but oftentimes, you know, how on the visit, you know, you're sort of looking at the testing and kind of talking about next year and follow up and kind of what's in front of you.

But sometimes it's a little bit difficult to see the forest for the trees, which is, you know, at some point, you know, you will get older. Get married, maybe have children. It's so fast, right? It's just, it happens in a blink. So I would say that asking your provider a little bit about growing up and sort of transition.

I would also say that the Adult Congenital Heart Association is an organization that is dedicated towards young adults, survivors of pediatric heart conditions. And I always tell my patients who, you know, they've already sort of transferred over, but I tell them and their families a little bit about this because there are a lot of resources on there about what do I do about my child's insurance?

You know, thinking about, you know, it's good for now. They're 21, they're on my insurance, but what do I do when they're 26 and they have to come off? That kind of stuff is really scary for parents and families. And it's so important to make sure that doesn't get interrupted. Things like, what do I do?

They're about to go to college next year. We're doing college tours. What should I think about? Should I speak to student health? They're going to another state. What can I do? And those are the types of questions that some of those resources can be found on the ACHA website.

But I think that certainly talking to your pediatric cardiologist and asking. And you know, one of the things that we have in our center is we have the ability to come see you at CHOP. So I think that's the other thing that I would say to our families here that because it's a joint program, you don't have to leave the comfort, the nest of CHOP in order to meet us.

So we will come see you. I've done that before. Our colleagues will do that. We are appointed in both hospitals. And even though the clinics are across the street, over on the adult side, we will come see you. And I think that's real comforting to kind of meet the new team in your own sort of comfort zone.

Because I think one of the things that I noticed, especially when I meet our CHOP families who've not met us before, is it's just, it's so overwhelming. So it's a new person, a new team, a new building, a new exam room. And it would make it just a little bit easier, I think, for some, not for everybody, for some, to meet you on your own turf.

And it's our turf too. So I think that's another thing that you can look for in terms of our program.

Julie Miller: Yeah. And again, we're very excited to be transitioning over and just such an incredible resource for the families at CHOP. So I'd like to thank you for you and your team's work and for meeting us today.

Yuli Kim, MD: Yeah. Thank you so much Julie.

Julie Miller: Thank you.