Supporting Kids with Heart Defects in the Hospital
Ages 3- 17 Years
Many kids with congenital heart defects (CHDs) never have prolonged hospitalizations. But sometimes, kids with heart defects have to stay in the hospital for weeks, months, or even years. Hospitalized children are still developing children, and they do better when they can stay busy and engaged as much as possible. Keep reading for ideas to keep kids stimulated, learning, and finding joy while in the hospital.
In this section
Links and titles on this page are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites and in these resources.
Hospital resources
Pediatric hospitals are often well-prepared to keep kids interested and engaged. Parents can ask their care team about opportunities at their hospital. They might offer programs and services such as:
Child Life Specialists who design and lead individualized games and activities based on children's interests and needs
Music therapy
Therapy animals
Art therapy
Play rooms
Free toys and games
Special events and group activities
Performers
Click below to see more of these kinds of hospital programs.
&w=3840&q=75)
Inpatient therapies
Inpatient therapies can help kids to make progress and stay busy during long hospital stays. Families can often receive therapies in the hospital through their medical insurance and/or through a school Indiviualized Education Plan (IEP). Many inpatient children stay involved in therapies including:
Physical therapy (PT)
Occupational therapy (OT)
Speech and language therapy
Psychotherapy (talk therapy)
Feeding therapy
Families can talk with their medical teams about therapies that are available to their child during a hospitalization.
&w=3840&q=75)
Home and hospital instruction
Children in the United States have the right to free and appropriate hospital instruction if they:
have more than 14 medical absences in a school year
are ages 5-18 (with or without an IEP)
are ages 3-21 (with an IEP)
In most states, children must receive at least 1 hour a day of academic instruction with a certified teacher, plus any other services on their service grid.
Families can set up home/hospital instruction by contacting the school principal or the district office. In some hospitals, staff can assist families in arranging home/hospital instruction. Click below for more information.
&w=3840&q=75)
Virtual camps, classes, and communities
When kids have access to the internet, they have the opportunity to participate in many virtual classes, camps, and groups. See below for some of these opportunities.
Some of these resources are specifically for kids with heart defects, some are for kids with any medical condition, and some are for the general population. Some resources are free, and some require a fee.
As always, parents should preview online content, and supervise children's use of the internet to ensure their safety.
&w=3840&q=75)
Home learning materials
When children are in the hospital for a long time, they have a right to home/hospital (homebound) instruction provided at no cost through their school district. Families sometimes use other educational materials in addition to, or instead of, the services provided by public schools.
Below are some free resources that are effective and accessible for many families and children at home and in the hospital. Some of these resources can easily be used by families. Others may be more suitable for a trained teacher.
&w=3840&q=75)
Moving forwards
When a child is in the hospital for a long time, it can feel like time stands still. In many cases, everyone is waiting, and the future feels uncertain. During these times, it can be easy to put many tasks and activities off until later, when there is more certainty and stability.
However, unless they are sedated or feeling very sick, developing children need opportunities for interest, learning, and excitement. Their brains and bodies are growing, and they are usually happier and healthier when they can play, learn, and explore.
Hospital and school district staff can help families to arrange activities for their hospitalized children, so that life does not need to pause when a child is inpatient.
Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP), Child Life, Pediatric Advanced Care Team, Social Work, and/or Spiritual Care. Families from other regions can use the link below to find their local care team.
You might also like:
Want to Learn More?
Look below for related resources, search resources by topic, or explore one of our custom guides.
Don't see what you're looking for? Let us know what you want to learn! We will try to add content to respond to your needs. Email CNPschedulingandquestions@childrens.harvard.edu