Cardiac Neurodevelopmental Program

When a child starts life with a heart condition, it can affect the development of other parts of the body as well — including brain development. That’s why we have a team of experts to help kids born with heart issues get the specialized developmental care they need. We have programs to nurture development for children with heart conditions while they are in the hospital, as well as after they return home. Even if your child did not participate in our inpatient program, we encourage them to take part in our follow-up care program.

About the Cardiac Neurodevelopmental Program

Children born with congenital (present at birth) heart disease (CHD) often spend the early months of their life in the hospital. Those who need surgery may also be in an intensive care unit, where they are more isolated than babies without health conditions. These first days, weeks and months of life affect how a child’s brain develops (neurodevelopment) through interacting with the outside world.

At Children’s Hospital Colorado, we look beyond immediate care needs to ensure that we are treating the whole child not just for today, but for their future as well. Our Cardiac Neurodevelopmental Program helps improve the neurodevelopment of children who have undergone cardiac treatment in two stages:

• While your child is in the hospital, we provide care through our Cardiac Inpatient Neurodevelopmental Care Optimization Program known as CINCO.
• Once your child goes home, we can see them in our Cardiac Neurodevelopmental Follow-Up Clinic and Neuropsychology Clinic to provide follow-up care until adulthood.

About the Cardiac Inpatient Neurodevelopmental Care Optimization (CINCO) Program

CINCO is the only program of its kind in the Rocky Mountain region and works to reduce the effects of hospitalization and isolation on brain development through a thoughtfully developed program and proven techniques. Our experts help improve the brain development of babies and toddlers with congenital heart disease who spend an extended amount of time in the hospital. Many of these children have had surgery for a congenital heart defect and are recovering in our Cardiac Intensive Care Unit (CICU) or Cardiac Progressive Care Unit (CPCU).

How can hospitalization affect neurodevelopment?

Longer hospital stays after surgery are one of the many factors that can harm long-term neurodevelopment. Factors that can affect neurodevelopment include:

• Extended time in bed with limited stimulation
• Reduced holding and skin-to-skin contact
• Frequent sleep interruptions
• Limited contact due to attached medical devices or bandages
• Being exposed to medications, such as those to treat sleep or pain

Hospitalization of a child or loved one also impacts caregivers and families, causing stress and anxiety. According to the American Heart Association, about 80% of parents or caregivers say they experience post-traumatic stress symptoms after their child’s surgery. These symptoms can last for years, and they can affect the child’s neurodevelopment as well.

What are the benefits of an inpatient cardiac neurodevelopmental program?

We help counter the effects of hospitalization on neurodevelopment by looking at post-surgery care in a different way. The CINCO team has spent years researching and developing methods that encourage a safe and effective recovery but also address neurodevelopmental needs.

By integrating neurodevelopmental practices into existing care for kids with congenital heart disease, we create a more home-like environment for kids with heart conditions. These methods include:

• Creating activities to increase time spent out of bed, including time being held
• Scheduling multiple types of care at the same time so your family has fewer interruptions
• Minimizing sleep disruptions, including skipping hands-on vital checks during the night for kids who are medically stable and combining medication schedules with care plans

Additionally, the CINCO team creates bedside developmental plans to provide individualized, developmentally appropriate activities for kids. We create and carry out the plans over several steps:

• Identifying children who could benefit from the program
• Updating plans weekly to include a goal from each therapist (physical, occupational and speech-language)
• Creating complementary age-specific kits with toys, books and activities to support neurodevelopmental care in the hospital and at home

Including family and caregivers in inpatient cardiac neurodevelopment

For the program to produce the best outcomes, we involve each child’s family and caregivers. First, we provide educational materials to empower parents and caregivers to promote their child's neurodevelopment while in the hospital.

These materials help parents and caregivers balance being present with their child and caring for themselves. They also guide parents on how to partner with the clinical team and advocate for their child during hospitalization. For example, our team can show parents and caregivers how to safely hold their child while they are connected to medical devices to encourage skin-to-skin contact and help develop an early bond.

Another important part of supporting caregivers is addressing mental health needs. This means working to identify risks for post-traumatic stress, anxiety and depression. Our social workers and psychologists help families address these needs.

Contact the CINCO Program

Our CINCO Program operates from our hospital located on Anschutz Medical Campus in Aurora. For information about the program, please call us at 720-777-6820.

About the Cardiac Neurodevelopmental Follow-Up Clinic

Our support for neurodevelopment doesn’t stop when your child leaves the hospital. Our Cardiac Neurodevelopmental Follow-Up Clinic provides ongoing support and care to ensure kids continue to meet their neurodevelopmental milestones at home.

Once home, we will monitor your baby’s development closely over time and give you suggestions of how to support their development, including connecting you to therapies to achieve milestones. We know that if babies get the right help early on, they will have the best developmental outcome possible.

For children ages 0 to 2 years, our Cardiac Neurodevelopmental Follow-Up Clinic provides expert evaluations and a variety of specialists to help with development in infants and toddlers. We offer a multidisciplinary clinic twice a month to monitor your child’s progress, support families and help patients and their families meet milestones together.

For preschoolers and school-age children, our specialized Neuropsychology Clinic offers evaluations for learning, attention and development that are tailored for kids with cardiac disease and follow guidelines from the American Heart Association. This team of experts can help diagnose developmental and learning problems and connect families with the best treatments so their children can thrive in school, in the community and at home.

Our team has specialized experience working with children with cardiac conditions and their families. We can also help you understand the learning and developmental risks associated with your child’s unique medical history, as well as connect you and your family to helpful resources that acknowledge the impact of your child’s heart condition on your family as a whole.

Contact the Cardiac Neurodevelopmental Follow-Up Clinic

For follow-up or outpatient care, you can call Cardiology Scheduling at 720-777-6355 to request a multidisciplinary evaluation appointment. We recommend calling two to three months in advance, because there may be a wait list.

For the Neuropsychology Clinic, you can call 720-777-5511 to request an appointment; this waiting list tends to be longer (up to 12 to 18 months) because these appointments are thorough and many families request them.

Who we treat at the Cardiac Neurodevelopmental Follow -Up Clinic

We see any child born with CHD. Even if your child did not take part in our inpatient program or have their original treatment here, we encourage any family who has a child born with a heart condition to contact us for follow-up evaluation and care.

Our cardiac neurodevelopment specialists

The program takes a great amount of coordination between a variety of caregivers and specialists. Within our Heart Institute, the cardiac neurodevelopment team is made up of many experts, including:

• Physical therapists, speech-language pathologists and occupational therapists
• Pediatric psychologists and neuropsychologists
• Cardiac social workers
• Inpatient cardiac child life specialists
• Doctors, advanced practice providers and nurses
• Specially trained Heart Institute volunteers

Innovation is at the heart of everything we do

We’ve pioneered cutting-edge interventions that allow us to review results and identify ways to improve long-term outcomes. While we mend hearts, we continue to innovate ways to nurture growing minds and support their ongoing neurodevelopmental needs. From reducing delirium to improving toddler-age cognitive scores, our research laid the foundation the program is built upon and many interventions that help our patients thrive each day. As one of the first programs to publish its outcomes, we’re redefining what’s possible for children with congenital heart disease.