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We offer the following comprehensive services to care for your child’s physical, mental, emotional, and behavioral needs.
To help your child function well and get the most out of life, we start by creating a complete picture of health and wellness. To do this, we perform a thorough screening and diagnostic exam. On a set clinic day, each member of our interdisciplinary team of experts evaluates your child through his or her specialty lens, requesting testing as needed. Testing can include a half day of heart, liver, and kidney testing (e.g., targeted echocardiogram, cardiac catheterization, abdominal ultrasound, labs) and a half day of neurodevelopmental testing. Additional testing—including cardiac exercise testing and monitoring; genetic testing; and liver, bone, endocrine, and pulmonary testing—may also be completed as necessary. Because single ventricle anomalies are typically diagnosed during pregnancy, we work closely with our Fetal and Pregnancy Health program team and our Neonatology team to diagnose and coordinate care for unborn infants and newborns. Our goal is to treat your child early and provide support to maximize health, thereby avoiding heart failure and heart transplant.
At the end of your child’s clinic day, you receive a detailed care plan with findings and recommendations, along with a complete medical history. We then follow your child throughout his or her lifetime, repeating an evaluation every year or every other year. We partner with your child’s primary cardiologist or pediatrician to carry out a care plan that optimizes health and wellness.
This unique service identifies areas for developmental improvement, helping children before they begin to struggle, thereby enhancing their ability to reach their full potential. Our team’s neurodevelopmental psychologist will provide a full evaluation of your child’s developmental, emotional, and behavioral skills, as well as assess learning abilities. We will then work with you to come up with a plan to ensure that your child reaches his or her full neurodevelopmental potential. Your child can complete neurodevelopmental evaluation and diagnostic testing on the same day or over the course of a few days—whatever is most convenient for you.
This program is designed especially for infants with single ventricle heart disease who are awaiting the Glenn procedure. In order to keep your child’s heart as healthy as possible, we empower you to closely monitor your child at home for any signs of heart distress. We provide tools for you to track vital indicators such as weight and oxygen saturation on a daily basis, encouraging you to call us if your child’s levels are out of range. Our dedicated pediatric nurse practitioner helps coordinate your child’s care by checking in with you weekly by phone to discuss results and any concerns you may have. This program, along with regular visits with your pediatrician and cardiologist, greatly improves your child’s health and survival.
Our school liaisons are trained educational professionals who can help you navigate your child’s educational needs. Whether your child is attending school or receiving homeschooling, our liaisons establish a plan for success in learning. They bring a deep understanding of the unique cognitive and social/emotional needs of children with a single ventricle. Our liaisons advocate with your child’s school for school services and accommodations to help your child succeed, including contributing to and managing 504 and Individualized Educational Plans (IEP).
Our dedicated registered dietitians meet with your child to assess nutritional needs and promote healthy eating habits to enhance the heart’s function and prevent diabetes and obesity. You are provided a nutritional plan that addresses your child’s unique needs.
Children with single ventricle defects are often restricted from activity by their cardiologists or inherently feel hesitant due to fear of injury during exercise. By performing exercise testing with your child’s overall health in mind, we create a safe exercise plan with specific exercises designed for children with a single ventricle.
Our dedicated child psychologist and social worker are expressly trained to work with children with a single ventricle and other highly complex heart conditions. They are here for you and your family to help you cope with whatever emotional and behavioral challenges your child might face. We learn how your family and child are coping with having a single ventricle and how your child is functioning across all important areas in life (e.g., home, school, hobbies, activities) and assess your child’s well-being. Through individual and family sessions, we work to increase resiliency, identify challenges, and learn tools to better manage stress and anxiety to improve quality of life. Our team will also help connect you with other families and children with a single ventricle, as well as social support networks in the community.