Complex Congenital Heart Disease and Development Clinic

The Heart Institute has a specialized follow-up clinic for babies born with complex congenital heart defect who need palliative surgery (a series of surgeries to improve cardiac circulation and help these babies thrive and grow). Children with this type of heart defect usually require a series of three surgeries during their first two to four years of life.

The Complex Congenital Heart Disease and Development (CCHDD) Clinic is here to support your family and baby every step of the way. We will follow your newborn throughout the entire process: after any heart surgeries, through discharge home from the hospital, and throughout your child’s long-term growth and development.

Follow-up care after heart surgery and throughout childhood

In addition to caring for your baby after heart surgery and your discharge home, the CCHDD Clinic also provides follow-up care throughout childhood. As part of our long-term care, we will regularly evaluate your child’s development and coordinate with your pediatrician and other specialists as needed. This helps ensure that you have the resources you need to care for your child’s heart and to meet normal developmental milestones. 

As part of our multidisciplinary care, experts from different areas of the hospital will monitor your child’s treatment. Our clinic includes specialists from pediatric cardiology, pediatric primary care, nutrition, infant feeding/development, social work, physical therapy, occupational therapy and speech/language pathology. 

What complex congenital heart diseases does the CCHDD clinic treat?

We see children with the following complex congenital heart defects:

• Hypoplastic left heart syndrome (This clinic is for all interstage HLHS patients. Interstage is the time between the first surgery, called the Norwood procedure, and the second surgery, called the Glenn procedure.)
• Hypoplastic right heart syndrome (tricuspid atresia)
• Single ventricle (double outlet right ventricle, double inlet left ventricle and/or severe Ebstein’s anomaly)
• Pulmonary atresia with intact ventricular septum (requiring a shunt and surgical palliation)
• Any child with a cardiac shunt for pulmonary blood flow (BT shunt, Sano shunt)

Why choose Children’s Hospital Colorado for complex congenital heart defect?

When your child is seen in the CCHDD Clinic, our comprehensive care plan includes:

• Weekly to bi-weekly appointments after a newborn’s first stage of palliative surgery (for a cardiac shunt patient)
• A developmental feeding specialist for infant feeding concerns
• A home pulse oximeter (used to monitor the oxygen levels in your child’s blood after discharge from the hospital)
• A dedicated pediatric nurse practitioner and clinic coordinator who works closely with your family by coordinating care with your pediatrician and other specialists
• Frequent echocardiograms (ECHOs) to monitor the structure and blood flow of your child’s heart
• A nutrition assessment at each visit
• Referrals for home therapy and services
• Developmental assessments every six months until four years of age, and then annually until a young adult is transferred to an adult cardiologist

 Learn more about your visit to the Heart Institute.