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Our brains need blood and oxygen from the heart in order to develop and function properly. Neurodevelopment refers to how our brains grow and form the connections that direct all of our behavior and experiences.  This is a lengthy process that starts before birth and continues into early adulthood. Heart defects in children, whether congenital or acquired, may significantly disrupt the neurodevelopment process.  

While some children don't experience any neurodevelopmental problems related to their heart conditions, some show clear problems early on such as difficulty learning to walk or talk. Because the brain develops over such a long period of time, some problems, like learning to read or write, only emerge much later when the brain is required to work quickly and efficiently to process more complex information. In recognition of these needs, the Cardio Neurodevelopmental Program was created. It is the only program of its kind in the region to provide comprehensive neurodevelopmental care to children with heart defects and their families.

The Cardiac Neurodevelopmental Program team


Our primary goal is to reduce the impact of cardiac disease on child development. Through partnerships with families and community providers, we aim to optimize neurodevelopmental outcomes for infants, children and youth with congenital or acquired pediatric heart disease through clinical, quality and research initiatives. The goal is to maximize quality of life across the lifespan. Our team is made up of cardiologists, cardiac nurses, neurologists, occupational and physical therapists, speech and language pathologists and social workers.

Services for patients


We offer evaluation of infants, toddlers and school age children at key developmental stages to ensure that any significant problems are identified early. We provide recommendations, resources and referrals for the best evidence-based treatments and interventions when needed. While not all children will need to be seen repeatedly for evaluation, we do recommend more frequent assessment during the early years to ensure that core milestones are being met at the expected rate and that appropriate interventions are available. As children age, we may evaluate for learning problems as these may not become readily apparent until the child is in school.

Services for families


For all families, having a child with a serious heart condition and going through hospitalizations, surgeries and other invasive medical procedures may leave you with a jumble of thoughts and feelings, including anger and grief about the situation. It is important to know that any and all thoughts or feelings you experience during this time are normal.

Our job is not only to help your child receive the best possible evidence-based care and interventions going forward, but also to make sure that you feel supported and have the tools you will need to effectively advocate for your child as he or she ages.

What to expect at the clinic

 

Families often find the information is helpful to understand what their experience will be like at the clinic.

You will receive a packet in the mail that includes several forms and questionnaires for you and one of your child’s teachers to complete and return back to the clinic. (Don’t worry, the questions are easy and we cover the return postage!) The paperwork is intended to provide an overview of your child’s behavior and cognitive functioning within multiple settings. This will also help with diagnoses as well as address any concerns in the school and at home. My baby is only 3 months old. 

Since your child’s development begins at birth there are many strategies that we can recommend to support your infant’s early growth and development as young as 3 months of age. We can connect you to resources if needed and prepare you for what to expect next in your child’s development. It is critical to get your child in for neurodevelopmental (ND) follow up as early as possible to identify and treat ND issues so that their impact on your child’s development can be minimized. This will help your child reach their fullest potential.

The clinic consists of a team of professionals who will evaluate both your child’s medical needs and his/her developmental needs and how these two areas relate to each other. The clinic team will provide suggestions for treatment goals that your child’s Head Start or Parents as Teachers team can also implement. We can also help you determine if your child might benefit from additional therapies beyond what they are receiving through these services.

When compared to heart healthy children, research shows that children with complex heart problems are at a greater risk for neurodevelopmental issues. Many of these children experience one or more deficits across a wide range of areas. We can help children who are currently developing on target in addition to those who are experiencing developmental delays. The team of clinic professionals will assess your child’s non-cardiac medical needs and screen for developmental, behavioral, emotional and learning concerns. A visit to the clinic can provide reassurance that your child is on target or may be able to detect mild concerns so that you can be proactive to prevent them from becoming a problem.

Just like there are many pieces in a puzzle, there are also many factors in a child’s life that affect their growth and development. Each provider that you will see in the clinic specializes in one part of the puzzle that makes up the whole aspect of your child’s development. The clinic offers you the unique opportunity to see all of these specialty services in one place, which allows us to partner with you to come up with a thorough and comprehensive plan that will help your child reach all of their appropriate milestones.

The frequency of your clinic follow-up visits depends upon your child’s individual needs. Younger children have more frequent developmental milestones that may require shorter waits between visits. Some children will need to be seen every few years for monitoring. Children who are medically complex may need to be seen more frequently.

Your child does not need any special preparations for the clinic visit. They can eat or drink as they normally do before and during the appointment.

Once your visit is scheduled, our billing and insurance specialist will confirm your insurance coverage and give you an estimate of your expected out-of-pocket expense for the clinic visit.

Many families find that it is helpful to bring snacks, drinks, and a few toys or games to help keep their child occupied during the clinic visit.

Some of the testing or follow-up that we may recommend may require special knowledge about heart disease in order to provide the best evaluation possible. We ask that you schedule these tests at Children’s Mercy. Sometimes they can be done at a neighborhood Children's Mercy location that may be closer to you (i.e. Children’s Mercy North or Children’s Mercy Kansas). Some tests do not require special knowledge about heart disease (i.e. a hearing test) and we do not require that they are done at a Children's Mercy location. Our schedulers understand your needs and will work with you and your child to prevent the least amount of missed work and/or school days. Often, families are able to coordinate visits with the clinic to occur the same day as their cardiology follow-ups.

Occupational and physical therapy provided in an outpatient setting like the clinic has the capability to provide a more in-depth (holistic) assessment of your child’s skills and performance at home, in the school and in the community. If treatment is recommended, we offer a variety of options to meet your child and your family’s needs. We offer both 1:1 and group therapy. The frequency of therapy offered by occupational and physical therapy treatment varies from intensive (2-3 times per week), weekly or every other week to monthly or periodic/consultative based on the needs of the child. Additionally, we offer a variety of unique services including, but not limited to, aquatics therapy, strength training groups, social skills groups, feeding groups, etc. The main focus of school OT/PT has to be on school related goals, so these typically have a more limited focus.

Individualized Education Plans are flexible documents which are created to fit the specific needs of your child and to help them gain the appropriate skills needed to access the general education set of courses. Your child is continuously developing medically, socially, emotionally and academically, so these needs may change with time. It is the Education Care Team’s role to help schools understand how all of those aspects are influencing your child and how they might be expressed in the classroom. Our goal is to work collaboratively with you to aide in the understanding of your child’s journey. The knowledge from both the medical team and the school will help to develop a comprehensive plan which most thoroughly fits your child’s needs.

The clinic provides a comprehensive treatment model that is specific to the needs of children with heart disease. DBS physicians are part of the clinic treatment team. They can provide follow-up DBS care for your child in the clinic and will be sure that testing and services already in place are not duplicated. In addition to a developmental pediatrician and psychologist, your child will be evaluated in the clinic by a team of physicians and other professionals to better integrate care (a neurologist, a geneticist, a nutritionist, and occupational or physical therapist, speech and language therapist, a developmental pediatrician, and a psychologist) and to support your child’s learning needs at school (educational specialists).

As a parent we recognize that you want to do everything you can to help your child succeed. Gaining more knowledge about them as a learner and how to help them help themselves creates an even stronger foundation for self-advocacy and growth. By participating in the clinic, you will be given the opportunity to learn more about your child’s medical, social, emotional and academic growth.

A child in high school goes through a lot of changes socially, emotionally and/or academically. The clinic can help by providing more information in regard to your whole child. Understanding where your child currently stands as a learner and helping them to understand it as well gives them the power to become a better advocate. That in itself is a great tool for all learners at any stage of their educational career. Considering the various stages your child goes through, the Education Care Team can also be used as a resource for when they begin considering the transition out of high school (i.e. information on the ACT and SAT, obtaining accommodations from College Board, accommodations in college, etc.).

Cardiac Neurodevelopmental Clinic Menu