Learn about the Neonatal Cardiovascular Center of Excellence from pediatric cardiologist Shabnam Peyvandi, MD, MAS, who directs or co-directs multiple programs for children with congenital heart disease. She explains how the center developed unique environments and services to meet the needs of these fragile patients and their families, discusses common complications for kids with CHD as they grow, and provides evidence for the value of early detection and intervention.
Hi, my name is Shabnam Pevandi. I'm a pediatric cardiologist and an associate professor of pediatrics here at UCSF Benioff Children's Hospital. I'm also the director of the cardiovascular research program and the associate director of the fetal cardiovascular program, both embedded within the pediatric Heart Center at the Benioff Children's Hospital. I'm here to talk about a unique program that we've started called the Neonatal Cardiovascular Center of Excellence, which is our version of holistic longitudinal care for babies born with complex congenital heart defects. It's important to first discuss why we decided to build this program. Congenital heart disease is the most common birth defect, and prematurity is very common in the setting of congenital heart disease. And both of these conditions, congenital heart disease and prematurity, are the leading causes of infant mortality and morbidity in developing countries. Importantly, babies with congenital heart disease are a special group. They are not small adults or even small children, and we have to pay special attention to organ maturity and how they can tolerate complex cardiac surgery during this period of their lives. Importantly, we have the expertise here at UCSF to care for this unique group of patients. This starts with our surgeon, Doctor Mohan Reddy, pictured here, who has pioneered cardiac surgery for premature and low birth weight neonates. He has pioneered this surgery from the early 2000s and we've had the privilege of taking care of these babies over a number of years. However, we quickly realized that we had to expand this expertise to outside of the operating room, including how we care for these babies before and after surgery and paying attention to their long term care. This led us to develop the neonatal cardiovascular Center of Excellence and in particular to develop a special wing in our hospital for these babies and their families called the NEST, which stands for Nurturing Environment for Small Hearts. This is an environment that is conducive for healing for these babies undergoing cardiac surgery during this period of their lives, and importantly, cohorts experts, including nursing, therapists, Cardiologists, intensivists, and surgeons to all come together and provide precise care for these babies and their families. In addition to the excellent medical and surgical care that we provide for these patients, one of the unique things about our program is our emphasis on developmental practices and developmental outcome. And this is important because many babies with congenital heart disease face developmental complications across the lifespan. So we started the Grand program, which stands for Growth and Neurodevelopment. This is embedded within the neonatal Cardiovascular Center of Excellence and is based on 4 bundles. The first is a care bundle, which is focused on how the baby is positioned in the bassinet. The second is a parent bundle. How do we incorporate more parental involvement in the day to day care of these babies? The third is the comfort bundle. How do we make babies comfortable with the least use of sedative medications possible? And finally, the fourth is the feeding bundle. which optimizes breastfeeding, lactation, and feeding protocols to optimize growth for these babies. Here we can see some of this work in action. We have amazing nurses in this unit that are pictured here administering these various bundles, which include how the babies are positioned in their bassinet despite being connected to many medications and a ventilator postoperatively. We have things like scent pads, which are ways for us to connect families with their babies during this vulnerable period. We also have developmentally appropriate tools like mobiles to optimize brain development for these babies during this time. One of the areas that we're extremely proud of is our emphasis on infant holding during this period of time. And this is really based on feedback that we have received from countless families over years of what's important to them. And one of the common themes we heard from many families was, I just want to hold my baby. Here you can see a mother holding her baby just a few days after a cardiac operation, still connected to a breathing tube and many medications. But this moment was very important for this mother, and we are positive that it was a positive experience for this baby as well. We have a holding tree that's pictured here. where we celebrate the first moment a baby is held after cardiac surgery. It's important to note that our program is really predicated on feedback and partnership that we have received from countless families that have been through our unit. And they told us what was important to them to deliver optimal care to their babies during this period of time. An example of how families participate with us is grand rounds, which we hold weekly. And you can see here in this image that families are front and center in these rounds where we discuss in detail growth and neurodevelopment of their baby. This includes discussing topics like the environment, such as light cycling or noise reduction for the infant. How is the infant positioned, lactation support for the mother, music therapy, as well as voice recordings for families that can't be at the bedside every single day with their baby. Just to take a few steps back, as I mentioned this earlier, the reason why these concepts are so important is that in the current era, neurodevelopmental complications are the most common complications patients face who have undergone major congenital heart surgery during infancy. In the current era, about 50% of our patients experience some degree of neurodevelopmental difference across their lifespan, whether that's motor delays early on or in school age experiencing language disorders, behavioral problems, and learning difficulties. And this knowledge is based on a research program that we have had here at UCSF for the last two decades called the Pediatric Heart and Brain Research Program. That has combined both neuroimaging and neurodevelopmental outcomes to understand how the brain develops and continues to grow in this unique group of patients. Our philosophy in this research program is to take a longitudinal approach, beginning in fetal life through adolescence to understand how the brain grows and develops in the context of congenital heart disease. We have pioneered several concepts through this pediatric heart and brain research program that has led to 2 decades of innovative research and over 50 high impact publications. I want to highlight one publication. That was recently published in 2023 that really demonstrates how our research directly impacts clinical care. In this study, we looked at rates of brain injury in our newborns with congenital heart disease, both before and after surgery. And found that at UCSF over this 20 year period, brain injuries dropped about 20% for babies with these heart defects. This is an example of our focus on not just protecting the heart, but also protecting the brain during this vulnerable period and how we've made strides in our clinical care to optimize brain development during this time. This includes things like postoperative blood pressure targets, decreasing length of stay, and using brain MRI to track progress in clinical care. I also wanted to mention this clinical program that is a direct result of our research program called the UCSF Healthy Hearts and Minds Program. This is our version of a neurodevelopmental follow-up program for our patients with congenital heart disease. Our program begins in the newborn period with the neonatal grand program, as I mentioned earlier, where we focus on inpatient developmental care for our newborns with complex congenital heart disease. We then continue to follow these babies during infancy through our high risk infant follow-up program in neonatology, and then continue to follow these patients during childhood and adolescence with neuropsychological evaluations at various time points. We know that this program is important and can optimize outcomes because the earlier we detect these issues and the earlier we intervene, the better the outcomes will be. Here is our Healthy Hearts and Minds program group, which is a very multidisciplinary group consisting of cardiologists, neurologists, neuropsychologists, and nursing to help support our families through this period. Here we have listed our contact information. as well as ways to refer to our program if you have a patient who has undergone cardiac surgical intervention within the first year of life. I want to thank you for your attention and if you have any questions about the neonatal cardiovascular Center of Excellence, Healthy Hearts and Minds, or any questions about how we care for this group of patients, please feel free to contact me. My email is listed here.
