Developmental Care: Managing Children's Pain

When a baby has a complex heart defect, their primary experiences and environments are often unusual. Instead of being at home in their neighborhoods, many babies with complex heart defects are in a cardiac intensive care unit (CICU), where they can experience stressors such as:

• bright lights

• beeps and other noises

• many caretakers

• painful and uncomfortable procedures

• separation from a parent 

By focusing on the rights and needs of each child and their family, Developmental Care can create a more typical experience for a hospitalized child. When hospitals use Developmental Care, babies are usually healthier and calmer.

Caregivers can prevent and reduce pain when they are able to anticipate which procedures are likely to be uncomfortable for a particular child. With this knowledge, they can provide extra support for children during challenging procedures. This can mean:

• Parents and staff consistently monitor children during procedures, and notice when children become upset or uncomfortable.

• Hospital staff keeps a record of how each child responds to procedures.

• Hospital staff regularly communicate among each other about pain and comfort, especially during shift changes. They aim to ensure that all caregivers are aware of each child's needs during specific procedures.

• When a procedure is likely to be upsetting, parents and staff calm and support the child before, during, and after the procedure.

• Parents take a lead role in monitoring and supporting children during procedures that could be upsetting.

Hospital staff can use a combination of strategies to reduce pain and increase comfort, and adjust the plan to each child's needs. Strategies to reduce pain and increase comfort include:

• Pain relieving medicines

• Sedating medicines

• Changing the environment of the room to make a child more comfortable.

  • Dimming lights

  • Adjusting temperature and ventilation

  • Reducing noise

• Helping the child to soothe

  • Holding or gently touching the child.

  • Giving a pacifier, bottle, finger, or breast to suck on.

  • Dipping a nipple in sugar water before giving it to a baby.

  • Swaddling in soft cloth.

  • A parent holding and talking to the child.

• Offering distraction to older infants and children.

  • Pop-up books

  • Videos

  • Songs

  • Stories

  • An engaging activity

Generally, clinicians aim to use as few medicines as they can, while making sure that children are comfortable. In particular, they usually try to avoid medicines that cause temporary paralysis (paralytics). If they need to use paralytics, they can pair them with a sedative and pain relief so that the baby remains comfortable.

During the early stages of healing, hospitalized babies sometimes require pain medicines to remain comfortable. Weaning off certain pain medications can make them feel sick and agitated. Hospital staff and parents can support babies by carefully planning when and how to wean babies off medicines. This can mean:

• All caregivers consistently use a standard tool to measure children's comfort and pain.

• Clinicians work with parents to create individualized plans to wean children from pain medicine.

• Caregivers make plans based on each child's communicated needs.

• Parents and staff consistently monitor children while they are weaning off a medicine, and provide individualized support based on what the children are communicating.

• Staff and parents monitor children for signs of:

  • Withdrawal

  • Agitation

  • Pain

• Caregivers treat children's withdrawal, agitation, and/or pain according to an evidence-based protocol, continually adjusting as needed to support each child.

Developmental Care is based on a simple principle: children are still children, even if they are sick. They have the same needs, rights, and desires as any other child, and their care should be centered within their family, culture, and community. When caretakers keep this principle in mind, they are much more successful at promoting the well-being of the whole child.

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.