Transcription:
Continuum of Care Provided by the St. Louis Children’s and Washington University Heart Center

Melanie Cole (Host):  Pediatric cardiologists at the St. Louis Children’s and Washington University Heart Center care for more children with heart disease than any other center in the region. My guest today is Dr. Caroline Lee. She’s a Washington University Pediatric Cardiologist at St. Louis Children’s Hospital. Dr. Lee, such a pleasure to have you back on with us today. Please give us a brief introduction to the Heart Center. Tell us a little bit about the history.

Caroline Lee, MD (Guest):  I am one of many cardiologists and one of many practitioners in the St. Louis Children’s and Washington University Heart Center. We are a large group of people including physicians, nurses, therapists, surgeons, and education specialists, psychology, et cetera who care for infants and children, teenagers and even adults with congenital heart disease and other heart diseases that affect the pediatric age group.

Host:  So, tell us a little bit about the services that you provide. You just mentioned a few of the conditions that you are able to treat. Expand on that a little bit more if you would.

Dr. Lee:  We serve all pediatric age groups in fact, starting from fetal life with making diagnoses of heart defects, congenital heart defects are those that infants are born with and so we make the diagnosis and offer treatment and therapies for those. And then we also have a large heart failure service as well. So, when the heart is not working well; whether it be a normally structured heart that has decreased function or a patient with congenital heart disease who over time their heart fails. We offer heart failure management as well as heart transplantation. And then we see a lot of our outpatient services are referrals for common pediatric concerns such as heart murmurs or evaluating abnormal heart sounds. We see a lot of patients for chest pain, for dizziness, for syncope.

And so, both on the inpatient and outpatient sides there’s a wide range of pediatric cardiology conditions that we treat and diagnose.

Host:  Wow, that is very comprehensive. So, what makes you different than other pediatric heart centers? Tell us a little bit about what makes you unique.

Dr. Lee:  I think we have a huge breadth of services from as I mentioned fetal diagnosis of heart defects through adulthood and all the times in between. So, I think what makes us unique is our broad range of services and specialists and also the depth of each of those specialties. So, I mentioned fetal cardiology which is my particular area of interest. I mentioned heart failure, but we also have a very strong electrophysiology team so those cardiologists who specialize in arrythmias, pacemakers and family history of sudden cardiac events.

We have a cardiac catheterization team that specializes in interventional cardiac procedures on infants and children. They can even perform procedures in infants under one kilogram and they as well see cardiac patients that are decades old. So a wide range of conditions and ages and sizes of patients in our cath lab. And as far as our services for our patients; we are really developing our neurodevelopmental program as well knowing that infants and children and teenagers with heart disease are at increased risk for neurodevelopmental delays and disabilities. As well as psychological conditions such as anxiety and depression. And so, we’re expanding our program to offer evaluations for those types of neurodevelopmental disabilities and offering therapies and support as well as connecting with psychologists or neuropsychologists or psychiatrists as necessary as well as education specialists to help as children transition back to school from being in the hospital.

Host:  Well as we’re talking about children transitioning; speak about the continuum of care provided by the Heart Center when it’s related to chronic conditions, fetal heart or perinatal behavioral health, cardiac, neuro. Speak about how that continuum of care follows a child.

Dr. Lee:  So, I think that’s a real strength of our Heart Center is beginning in fetal life, setting the stage to really care for not only the patient but the family as well. So, starting from fetal diagnosis where we counsel the parents about the actual heart condition that we’ve diagnosed and give information about what to expect in terms of cardiac interventions and potential hospitalizations and long-term future prospects. We realize that it’s one thing to make the diagnosis and to be able to prepare and treat the baby once they are born; but we also know that that produces understandably anxiety, sometimes depression, certainly stress for parents and even siblings.

And so, we offer a perinatal behavioral health program. We have a therapist who meets with all of our fetal families that are diagnosed with a baby with a heart problem just to check in and see if they would benefit from ongoing support during pregnancy and also after birth as well. Because it’s not just getting the news about the heart defect that can be trying for a family but going through the whole process and the cardiac ICU, going through surgery, the recovery and a lot of responsibility that comes with taking home a baby with a heart defect. We know that can be hard and stressful and so we do want to offer psychological support for the parents as well as excellent care for the baby with the heart condition.

And so, we continue that on after the fetal time period even in our ICU and going home. We have as I mentioned before, really tried to expand on the neurodevelopmental focus and the care of our infants knowing that the ICU is an unnatural environment for the baby and for the family and for bonding and for normal holding and touching and care by the family. And so, our inpatient neurodevelopmental team including our terrific therapists in speech therapy, physical therapy, occupational therapy, childlife; we work with them to make the ICU environment and our step-down unit as developmentally friendly, meaning we don’t always have the TV on in the room, we don’t have the lights on 24/7 when an infant should be resting. We encourage holding by the parents even if the baby has a breathing tube, even if the baby has a lot of IV lines and so, we’re just trying to be more mindful of that kind of care that can not only affect the baby’s development, but the bonding between the family and the baby.

And so we carry that to the outpatient world as well once the baby is discharged from the hospital, or the young child. We offer neurodevelopmental evaluations throughout their childhood just to touch base with the family to assess the child and look for developmental delays or struggles. We do offer developmental testing and we have a neurologist, a newborn medicine specialist, all of our therapists, psychologists and partnering with psychiatry to make referrals as necessary. So, we will – parents will describe struggles in school perhaps or with attention. We know that inattention is more common in children with heart defects and so, we screen for those things and then offer connections with resources that the parents can use and make sure that their school system is also supporting them.

So, I think that continuum of care that you are referring to is really important. I think it’s really important for referring providers and families to know that it’s not just making the heart diagnosis that we want to do a good job and not just doing a good job with heart surgery but that we will be with the family starting from a fetal diagnosis and supporting their psychological health as well for them and their child. And that we know that their neurodevelopment affects their quality of life as much as our heart health, if not even more and so we want to be supporting families in that way as well.

So, I think that’s what’s really been fun for me as a cardiologist is of course I like the challenge of making a diagnosis and counseling a family but the real joy comes in following children over time and seeing them thrive and be as normal as possible, attending school, participating in sports, having a good social and family life and those are things that our Heart Center I think is really transitioning to focusing more on because that’s what really matters I think to parents and families in the long run.

Host:  I think that it does as well and what a comprehensive multidisciplinary care that you are providing Dr. Lee. Do your competitors offer the level of service that you provide and at what point would a pediatrician refer to the Heart Center? Are these cases mostly in utero or are there other red flags that should be looking for that would indicate a heart condition after birth?

Dr. Lee:  So, with regards to other centers in the area; I don’t believe that any other centers offers as I mentioned the depth and breadth of services that we do. I feel a lot of times people focus on heart surgery as being the main part of a child with heart disease that they have to go through which is very true. You definitely want an excellent surgical result and excellent care for the child after surgery and any interventions, but I think what doesn’t get recognized are all the other players and all the other team members that are important to making the child’s long-term life a success or as normal as possible.

And so I think that’s where our Heart Center excels in offering them just different things that are outside the strict realm of strict cardiac care but looking beyond that to the neurodevelopmental and psychological aspects as well. And in regards to referrals. OBs are our big referral obviously for our fetal patients when OBs suspect a heart defect. But pediatricians, it’s really important that we partner with our pediatricians in our community to be able to offer quick access to patient visits and so we have a same-day doc is what we call it to offer same-day appointments if a pediatrician or family practitioner is concerned about say a new baby with a heart defect or a teenager who passed out during sports or something like that, that sounds quite urgent.

We will offer appointments within a day. And so, I think that’s something that’s important for the providers in the area to know is that we really want to be responsive to those urgent requests. And so we do that as well as seeing regularly scheduled follow up appointments for our heart patients as well as any new referrals. And we’ve expanded our locations as well. St. Louis Children’s Hospital is our main place but all the different places that SLCH is expanding to including Shiloh, to South County and to the Children’s Specialty Care Center. We offer appointments there as well. And in fact, cardiology is the subspecialty that offers the most outlying clinics as well, outreach clinics throughout Illinois, southern Illinois and Missouri.

Host:  As we wrap up, Dr. Lee, what else would a referring physician want to know about your Heart Center? Speak a little bit briefly about your outcomes and what you would like them to takeaway from this episode.

Dr. Lee:  Outcomes are obviously very important. There’s a movement within pediatric cardiology nationwide for transparency of outcomes. That means that centers are open about their surgical results because patients should be privy to that kind of data. And so, that’s something that we offer in my world at the Fetal Heart Center, offering data to prospective families about surgical outcomes. But as I said, it’s not just the surgical outcomes that matter. It’s the overall support services and quality of life. So, I think that’s where our strength really is as well is not just getting a child through the heart operation but going home, having the supports in place.

And I did neglect to mention a really important program I think that we offer that’s unique in this area as well is what we call our high risk cardiac infants and many of them are quite complicated. They may go home with a feeding tube, multiple medications, so they are medically complex. We help support those families with a special program what we call a high risk cardiac infant monitoring program where we send infants home with an oxygen saturation monitor and a scale and we touch base with the family at least a couple times a week and in fact, next month we’ll be launching using an app that we give parents an iPad to go home with and they will be submitting oxygen level data and weights to our monitoring team.

So, between phone calls and the iPad app we provide the support to families that are going home with these complex infants. So, I think that’s something I would really emphasize and what I’m really proud of to be a part of and that our Heart Center does is to provide the families support and I think in the end, the surgery or the crass procedure, those are all part of it or even getting through the fetal diagnosis period. That’s only a snippet of a child’s life or heart journey but along the way, they will benefit from a lot of ancillary support beyond just in hospital services and I think that’s where we are really growing and expanding. And I think that’s what’s really making a difference for these families.

Host:  Wow, such great information and such comprehensive care. Dr. Lee, thank you again. You are just an excellent guest. Thank you for joining us. And that wraps up this episode of Radio Rounds with St. Louis Children’s Hospital. To consult with a specialist or learn more about services and resources available at St. Louis Children’s Hospital, please call the Children’s Direct Physician Access Line at 1-800-678-HELP. Or you can head on over to our website at www.stlouischildrens.org for more information and to get connected with one of our providers.

If you found this podcast informative, please share. Share with other providers, share on your social media and be sure not to miss all the other interesting podcasts in our library. Until next time, I’m Melanie Cole.