Infant Assessment of Babies with Heart Defects

Many babies with heart defects should have a neurodevelopmental assessment between the ages of 6 and 12 months. Usually, a medical professional such as a doctor or nurse practitioner performs the assessment at this age. The provider may be: 

• A pediatrician 

• A neurologist 

• A developmental behavioral pediatrician (DBP) 

• A nurse practitioner with expertise in neurodevelopment 

Most cardiac neurodevelopmental programs have providers trained to perform these assessments. 

During the assessment, a doctor or nurse is trying to understand how a baby is developing. They identify risks, screen for any possible problems, and recommend interventions to help.  Sometimes the  assessment is brief, with a focus on growth measures and general development.  Other times the assessment is longer, and may include specific tests.  The provider will make a choice depending on the individual baby’s needs.  The provider wants to understand: 

• The baby’s medical history 

• How the baby is growing 

• The baby’s motor skills 

• How the baby is learning and understanding 

• How the baby is communicating 

• How the baby sleeps and eats 

• Sources of stress in the family 

• Issues that may affect how a baby is likely to develop in the future (examples: a brain injury or a genetic diagnosis)  

For this assessment, parents bring their child into an exam room at a hospital or clinic.  The medical provider talks with the family and examines the child. 

Talking with the family is a big part of the assessment at this age. Families are the experts in how their child is developing, and should be prepared to share their thoughts, questions, and concerns. 

The provider may ask parents questions about their child’s medical history, such as: 

• What surgeries or procedures has the child has? 

• What are the child’s diagnoses? 

• Has the child had any seizures or strokes? 

• Has the child had treatments such as extra corporeal membrane oxygenation (ECMO)?    

• How much time has the child spent in the hospital? 

The doctor or nurse will also look in the child’s medical record to help answer these questions.

The doctor or nurse may ask the parents questions about their child’s sleep and feeding, such as: 

• When does the child sleep?  

• What does the child need to fall asleep? 

• How long does the child sleep at a time? 

• How does the child eat? 

• What does the child eat?  

• Does the child often vomit or cough around eating? 

The doctor or nurse may ask the parents questions about their child’s development, such as: 

• Does the child hold their head up, roll over, and sit up? 

• Does the child crawl? 

• Does the child pull to stand, stand on their own, or walk? 

• What kind of noises does the child make? 

• How does the child respond to noises and words? 

• How does the child use their hands, and handle objects? 

• How does the child play? 

• How does the child interact with other people? 

At 6-12 months, the assessment often includes a neurological examination. The nurse or doctor examines the child and does some activities with them.  The examination may include assessments of: 

• How quickly and evenly the child is growing  

• Eye contact 

• How the child sees and hears 

• Face and eye movements  

• The child’s muscle tone 

• How strong the child is 

• Whether the child is equally strong on both sides 

• How the child moves and uses their body 

• The child’s reflexes 

• If the child has any signs of a genetic diagnosis 

• If the child has any signs of a brain injury 

Parents are usually in the room for the physical exam. They should ask questions and share ideas about what the medical providers are doing.  

After the assessment is complete, the medical provider talks with the family about what they have learned. 

 They usually tell the family: 

• Ways in which the child is doing well 

• Any delays or differences in the child’s development 

• What services and interventions the child needs 

• How to access the services and interventions 

• How parents can help the child at home 

• When the child should return for their next evaluation 

• Any other medical testing the child needs.  Many children do not need additional tests. For those who do, these tests may include: 

  • A brain magnetic resonance imaging (MRI)  

  • Genetic testing 

  • Vision testing 

  • Hearing testing 

Families should make sure they leave the assessment with a good understanding of next steps. They should ask questions until they feel sure they understand how to follow the recommendations. 

This content was reviewed by a pediatric neurologist at Boston Children's Hospital.

Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their local care team.