Developmental Care for Babies with Heart Defects

When a baby has a congenital heart defect (CHD), their primary environments are changed in ways that are often not ideal for the baby’s development: 

• The womb: Before birth, the baby may not have enough oxygen or nutrition 

• The parent’s body: The baby may not be able to be held at all, or as much as they want.  Mothers who want to breast-feed may not be able to. 

• The family’s social group: The baby may be at the hospital, instead of in the community. 

Instead of living within a typical family home, many babies with heart defects spend time in a cardiac intensive care unit (CICU) or cardiac step-down unit.

Within a hospital, babies often experience both overstimulation and understimuation, in a way that could be unhelpful to development.

Overstimulation can include:

• Bright lights, including at night

• Beeps and other noises 

• Many caretakers 

• Painful and uncomfortable procedures, despite their protest 

• Being woken for medical care

• Separation from a primary caregiver

Understimulation can include:

• Staying in the same room and the same bed

• Limited movement and exploration

• Reduced positive experiences with toys, music, language, people, movement, and sensations

• Sedation

• Staying inside

Developmental Care practices try to make a more typical experience for a developing baby.  They focus on the rights and needs of the baby and family, and all decisions and care are designed to meet the needs of each individual baby.   

When hospitals use Developmental Care, babies are usually healthier and happier. 

Although Developmental Care practices were first created for babies born preterm, they are also helpful for other sick babies. 

Babies have brains and bodies that are constantly growing, and they require special care in order to flourish.  

When babies are sick, their developmental needs do not disappear.  They are vulnerable because of an illness, and are also still learning to:

• Use their bodies

• Communicate with others

• Understand their world

• Control their feelings

• Manage their state

• Form relationships

Sick babies do better when they are treated AS babies, and when their development is considered in all aspects of their care. “Developmental Care” is a way of taking care of sick babies that focuses on meeting their unique needs as babies and as individuals.

These key Developmental Care practices can help support a baby’s development in the hospital: 

• Reading the baby’s cues, and offering care that they want and need 

  • Food when they are hungry 

  • Rest when they are tired 

  • Stimulation when they are alert and calm 

• Reducing over-stimulation 

  • A quiet and dim room 

  • Minimizing, clustering, and carefully timing uncomfortable procedures 

• Parents involved as much as possible 

  • Feeding, diapering, holding 

  • Making decisions about care 

• Keeping the baby calm and comfortable 

  • Body contained and aligned 

  • Holding as much as possible 

  • Pain management

• Monitoring development, and working towards goals 

  • Individual developmental plans 

  • Appropriate activities to make progress 

• Using hospital services to promote development 

  • Physical therapy (PT) 

  • Occupational therapy (OT) 

  • Speech and language therapy 

  • Music therapy 

  • Child Life services 

 Families can ask their hospital staff about developmental care practices in the hospital.  

The principles of Developmental Care can extend across contexts, and into all domains of a young child's life.

When parents bring a baby home, they can continue to promote healthy development with practices such as reading their child's cues, keeping a child calm and comfortable, and arranging interventions that promote development. Families can seek additional support from their cardiac neurodevelopmental team.

This content was reviewed by a psychologist 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.