acDr. Rania Habib: A cardiovascular diagnosis in an infant or child can be extremely overwhelming for the patient and their family. The Children's Health Heart Center prides themselves on their continuum of care services.

this is Pediatric Insights, advances and Innovation with Children's Health, where we explore the latest in pediatric care and research. I'm your host, Dr. Ranya Habib. This episode explores the neurodevelopmental programs that further the support for pediatric cardiac patients and their families, including parent children interaction therapy, abbreviated P C I T, and the newborn individualized developmental care and assessment program, abbreviated ncap.

I am joined by two of the center's pediatric psychologists, Dr. Corinne Anton, the Director of the Cardiac Neurodevelopmental Program at Children's Health, and Dr. Randi Cheatham-Johnson, an Assistant Professor at UT Southwestern. Welcome Doctors, it is an honor to have you both on the show today.

Corinne Anton, PhD, ABPP: Thank you. So excited to be here.

Randi Cheatham-Johnson, PhD: Thank you. Very, very excited. Thank you for the invitation.

Host: To begin, can you share about the work that you are both doing to further the continuum of care? Specifically, what is involved in each of these neurodevelopmental programs?

Corinne Anton, PhD, ABPP: That's a fantastic question. So at Children's Health in the Heart Center, we are really focused on the holistic approach to each of our patients and treating every aspect of their healthcare including mental health and the family system. And that is starting at the fetal diagnosis period. And we will follow them through their inpatient admission, which incorporates, the Newborn Individualized Developmental Care and Assessment Program, which is also known as NIDCAP in the industry.

And then we continue to follow our families in our outpatient programs, which focuses on neurodevelopmental assessment, screening, and intervention, including PCIT, Parent Child Interaction Therapy. Our program is, also focused on helping support each of our patients in transitioning into adult care, because moving from a pediatric system into an adult system can be challenging, and we are here to help support our patients and families navigate that process.

 I think it'd be really great to hear from Dr. Cheatham-Johnson on her role as she focuses predominantly on supporting families in that fetal and inpatient phase, as well as the PCIT intervention phase.

Dr. Rania Habib: Absolutely.

Randi Cheatham-Johnson, PhD: Yes, of course. I'd love to elaborate on some of the services that we've layered into the Heart Center as we focus on neurodevelopment as a whole. And I'd like to highlight that many of the services that Dr. Anton mentioned, have been offered for some years now, some newer than others. However, with the addition of new team members, we have the expertise and bandwidth to be more intentional about creating meaningful linkages between our services to ensure continuity and further enhanced care for both the patient and their families.

So our Cardiac Neurodevelopmental Program provides counseling for caregivers once a congenital heart disease has been confirmed. And during those sessions, either myself or Dr. Anton provides the family with neurodevelopmental education, an overview of the history of cardiac neurodevelopment, and we also review developmental outcomes and complexity within pediatric congenital heart disease populations.

We then walk families through what inpatient hospitalization typically looks like and goals we like our families to achieve during that time, including as much holding and skin to skin as is medically safe while encouraging participation in developmental therapies to enhance their children's care.

And also during these sessions, we discuss parental mental health and support services that are available at the bedside with me. As well as our weekly caregiver support groups facilitated by our center's social work team. And in our fetal program, we are also developing a perinatal mental health screening protocol to monitor symptoms of anxiety, depression, and traumatic stress during fetal follow-up appointments.

And by monitoring these symptoms, we are able to provide tailored care, including connecting caregivers with appropriate mental health resources. So one of the new intervention programs that we're going to be offering very soon through our outpatient services is Parent Child Interaction Therapy. And in the field of psychology, our gold standard for addressing those early behavior problems in young children are behavioral parent training programs.

And PCIT or Parent-Child Interaction Therapy is one of the more popular options of behavioral parent training programs. It's been around for decades. And also the CDC recommends behavioral parent training as the first line of treatment for children who are at risk for developing Attention Deficit Hyperactivity Disorder or ADHD.

And so we're really excited to be offering PCIT to our heart center families. And actually, while PCIT has been adapted for a number of populations, whether it's foster care children or children who are on the autism spectrum; it has been less so used or implemented in the cardiac population. So we're really excited to be able to adapt and provide these services for our heart center children and families.

Dr. Rania Habib: I absolutely love this holistic approach that you guys are taking to both the patient and the family. What steps of the process have been the most important to get these programs in place, and what challenges have you both faced along the way?

Corinne Anton, PhD, ABPP: That's a really great question. And probably a question that a lot of folks run into as they're trying to implement programs like these. I think that the first step is really having the education on what is needed for your patient population. You know, turning to the literature to help guide you on what interventions or programs are supportive to improve the care of your patient population.

But next steps often include leadership support. You have to have buy-in from the administration in your department, your stakeholders for each program. So for us, that's going to be our heart surgery team, our cardiac catheterization team, our fetal team, our heart transplant team, as well as all of our cardiac intensive care providers and our acute care cardiology providers.

So leadership is imperative. Furthermore, you absolutely have to have additional staff support, anyone who's walking in on that unit or into this department needs to understand that we have a duty to not only provide good medical care and outstanding outcomes for our patients in terms of surgical intervention and when they're admitted to the hospital; but afterwards, we also have to be providing that care to our patients more consistently on the outpatient side. And so, folks have to have buy-in on the importance of those things. And there's been a really recent shift in the focus on cardiac neurodevelopment within the pediatric cardiology realm in general.

It is no longer acceptable to just have good surgical outcomes. You also have to be looking at the child's cognitive capacity, their performance in school, how are they doing in terms of social development? How is that family system supporting that child? Do they need additional support and assistance?

And so when folks understand and have that education, you can help get that buy-in from your team. However, we know that education is necessary, but it's not sufficient for change. And so what really can help change and make a difference is actually doing hands-on care, and that's where that NIDCAP program piece comes into play for our inpatient admissions. We are really focused on teaching our team members how to observe what each infant and patient is communicating to us. It is amazing that folks don't realize that our babies are communicating to us. They can tell us things and let us know how they're feeling and what needs that they need to have met in order for them to eat, sleep, engage, socialize. Maybe they need a rest. And if we are able to read those cues and those behaviors, we can respond more appropriately in the moment to help improve their brain development, their behavioral development, their emotional regulation. And so going back to your question, you have to have buy-in from folks.

They have to understand the importance of what's going on, but then they also have to have tools and skills on what to do to help support patients at bedside to help support patients when you're seeing them in clinic.

Dr. Rania Habib: Dr. Cheatham-Johnson, did you want to add anything?

Randi Cheatham-Johnson, PhD: Yeah. To add to what Dr. Anton mentioned about leadership support and also getting the buy-in of our allied health professionals who I work very close with in the Heart Center, is really giving them the understanding of how specifically interventions like Parent-Child Interaction Therapy can lead to better outcomes not only for the patient, but also for the caregiver and the family as a whole. So we know that in children with medical complexities that it sometimes leads to permissive parenting practices because early on we are teaching caregivers to be hyper-focused on their children's physiological changes to prevent a cardiac event. And what happens is over time, parents are a little bit more lax in implementing consequences and following through when they see those typical early behavior problems like tantrums and non-compliance. But as the child gets older and they're getting prepared for school entry, we want them to also be prepared for the expectations of the classroom.

And so, in preparing the child as a whole, we're really wanting to empower caregivers to shift the way that they're parenting so that they feel more competent effectively parenting a medically complex child.

Host: Absolutely. I love the fact that you guys are really focused on multidisciplinary care where you're making sure that not only is the surgery going well, but the family's involved and the outpatient specialists are involved. What unique problems though, do the parents of these patients face that are resolved through these continuum of care services?

Randi Cheatham-Johnson, PhD: That's a really good question. I think if you're wanting to, if I can think of anything, I think it starts at the beginning when parents first get a confirmed diagnosis while they're still carrying. I think, what we know is that it could potentially change the landscape of that pregnancy and then the admission.

And so by providing caregivers with mental health support and coping skills that they can carry through their pregnancy, through inpatient admission; we're really hoping that they'll it will be able to better help them cope with having a medically complex child and also deal with the future in that journey and what it could look like.

And so I think that's specifically unique to parents of children with congenital heart defects is having this bombshell dropped on you that you're not necessarily, might expecting. And making sure that you have the services to equip you with the skills to process those things.

Corinne Anton, PhD, ABPP: I'd like to jump in and also add that another role that we focus on in the Heart Center is to bring parents into their care of their child. Oftentimes, they are thrown into a very scary, unpredictable environment in the cardiac ICU or in our acute care unit, and they're observing and watching nursing staff and physicians and surgeons and therapists and respiratory therapists come in and do things to their child and they don't know what they can do, how they can continue to help support their child.

And the Cardiac Neurodevelopmental Program here at Children's Health is very much focused on bringing parents into their child's care, taking that scared parent sitting in the back of a hospitalization room and bringing them into the bedside and letting them hold their child and engage with their child, participate in physical, occupational, speech therapy, take their child outside of the hospital room and off the unit if able to now, see other things, to hear other noises to be exploring different areas.

I think that our mission is really to partner with our families, and that is our biggest goal is to let families know that you are the main caregiver here, and we want you to advocate for your child and come alongside and support them and be a parent even though you're in this very scary environment.

Host: It is such a scary diagnosis for these families. So could you both share some success stories that you've had in working with patients and families from the neurodevelopmental perspective?

Corinne Anton, PhD, ABPP: Yeah, absolutely. So, I think that what we get to see that is so exciting is that we are able to follow these families from day one, like Dr. Cheatham-Johnson said. She meets families at the fetal visit and you get that opportunity to establish that relationship, provide the education, and in a way show families that although this is terrifying, there is a light at the end of the tunnel.

We are here to support you and support your child from day one until they graduate and go off to college. We will be here. And so we are able to follow them through that fetal diagnosis, their inpatient admission, their surgical procedure, all the way to an outpatient neurodevelopmental follow up where we're monitoring cognitive development and motor skill development, academic achievement, making sure that the child is successful going into a schooling environment. We're monitoring and seeing success and behavioral growth, and coping, and establishing social relationships. We have been able to see our patients grow into adolescents. We are able to see our adolescents transition into adult healthcare. And it is just so amazing to watch the parents, you know, as soon as they get more engaged and they feel like I can engage and hold my child, I can advocate and support my child while they're here in the hospital, and see that grow throughout the whole lifespan. It's really such an honor to be involved in that process. I know Dr. Cheatham-Johnson has worked with a handful of our families in supporting their bond and attachment with their child and in helping them feel more successful in supporting their child and their child's needs.

Randi Cheatham-Johnson, PhD: Yes. And I'd also like to add that when you have such a large and robust multidisciplinary team, it's really special when each provider or professional respects the expertise of each other and feels comfortable and competent referring families to a provider. And I think with the addition of new members to the team, we have been able to prevent families from falling through the cracks because we are building these linkages that will connect this continuum of care so that even if a child is not necessarily.

born and transferred to our center early on; if they come to us at a later time, there are services that we can provide from them at whatever stage they're at. And there are providers who can connect us with them, and I think that's the special part as well.

Host: It absolutely is. In maintaining this holistic approach, how can healthcare professionals collaborate to ensure a comprehensive and integrated care plan for the child and their family?

Randi Cheatham-Johnson, PhD: I am glad you asked that question because it gives me the opportunity to continue to encourage our physicians to make sure that they are keeping up to date on mental health services that are available within their own systems and also making sure that they are consulting with mental health professionals on what resources are available for their families.

Corinne Anton, PhD, ABPP: Yeah, and I would like to echo what Dr. Cheatham-Johnson said, in that collaboration is key. It has to happen. That's just the way medicine has moved. so we are always collaborating not only, with our own team members within the Heart Center, but even outside of the Heart Center in relation to supporting our patient's needs.

Many of our patients have other medical complexities and so I can think of an example where we've referred some of our patients for autism testing and needing to communicate with our autism specialists. We have other patients that are also followed in our Thrive or NICU follow up program. We communicate with those team members. So having the presence of a cardiac neurodevelopmental program is important, but folks need to know about it, need to understand what it is and how to refer, all the new programs that we're implementing and how their patients can benefit from it if they are a heart center patient.

So, I think communication is key and just continuing to advertise and market what we're doing so we can see more patients and other programs can capitalize on what we are doing by hearing these exciting new programs and adventures we're taking on.

Host: it is really wonderful what you're doing. As a surgeon myself who works on a multidisciplinary team, it's so refreshing to see these holistic approaches to the patient where you really are integrating every aspect of that patient's care. So if a healthcare professional wants to make a referral to one of your programs, how would they do that?

Corinne Anton, PhD, ABPP: We have a website it's Children's Health Cardiac Neurodevelopmental Program, and on that website we have a referral form. So you can go on there, you can fill out the referral form and then our program coordinator will receive that information and we go from there.

Host: Dr. Anton and Dr. Cheatham-Johnson and has been a pleasure speaking with both of you today. Is there anything else you would like to add for our listeners?

Corinne Anton, PhD, ABPP: Just thank you so much for taking the time to listen to the work that we're doing and to learn more about cardiac neurodevelopment.

Randi Cheatham-Johnson, PhD: Yes. Thank you for the opportunity to talk about our programs and our services.

Host: Thank you so much for your time with us today and to our audience for listening to Pediatric Insights, Advances and Innovation with Children's Health, where we explore the latest in pediatric care and research. You can find more information at children's.com. If you found this podcast helpful, please rate and review or share the episode and please follow Children's Health on all of your social media platforms.

I'm Dr. Rania Habib. Wishing you well.