Advanced Care Options for Kids with Heart Defects
Ages 0 - 24
Most kids with complex heart defects require treatments such as surgery, catheterization, or medication. These treatments usually can allow patients to live long and relatively healthy lives. However, some kids do not get better with the typical treatments. They may have more complicated heart defects, or problems with multiple organs and systems. Sometimes, they have poor outcomes after procedures. Advanced treatments offer patients a chance to feel better and live longer.
In this section
Why advanced care?
Children with heart defects may require advanced therapies if their bodies are not working well enough to keep them healthy. For example, children may need advanced therapies if:
their heart cannot pump enough blood to give their body the oxygen it needs
their lungs cannot provide enough oxygen to their blood
When someone’s heart is not working well enough to keep the person healthy, we say they are in “heart failure.” “Heart failure” sounds scary, but in most cases doctors can help people with heart failure to feel better. Many kids with heart failure eventually go on to live active and healthy lives. Advanced care can help many children in heart failure to recover. However, advanced care can also pose unique challenges for the wellbeing of both patients and their families.
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Types of advanced care
Multiple treatments and therapies can be considered "advanced care" for heart defects. Families should talk with their hospital team to be sure they understand the options, and can make the best decisions. Types of advanced care can include:
Extra-Corporeal Membrane Oxygenation (ECMO): a machine does the work of the heart and the lungs, allowing a person's organs to rest
Ventricular Assistance Devices (VADs): a machine does the work of pumping blood by squeezing the heart
Heart transplant: the diseased heart is removed, and a donor heart is implanted in the body
Click below for more information on different types of advanced care.
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Supporting the whole child
When a child is physically sick, caregivers often focus on physical healing. This focus is entirely understandable. However, sick children are still developing children, and they do best when they are supported across developmental domains.
Whether a child has a VAD, is on ECMO, and/or is waiting for a transplant, parents and providers can always take steps to support the health of the whole child.
For example, adults may be able to:
Sing and read books to a child on ECMO
Enroll a child on a VAD in home/hospital instruction
Do daily physical therapy (PT) and occupational therapy (OT) to keep and build skills
Visit with friends and family, over a video call or in person
Meet with a therapist to manage thoughts and feelings
Hospital staff can help families to find safe and rewarding ways to engage, comfort, and challenge children at any stage of treatment. Families should always check with their medical providers before starting a new intervention.
See below for more specific ideas for supporting children receiving different types of advanced care.
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Find the helpers
When a child requires advanced cardiac care, the experience can be immensely stressful for the whole family. In the famous words of Mr. Rogers: look for the helpers. Families should ask for help, and accept help when it is offered.
Within the hospital, families can get support from professionals such as:
social workers
psychologists and/or psychiatrists
Child Life Specialists
Palliative Care providers
spiritual care providers
Outside of the hospital, many families find solace and support from family, neighbors, religious organizations, and school groups. Therapists can help everyone in the family to cope with uncertainty and stress, and support groups can help families talk with others who have been through similar situations. No one needs to go through these experiences alone.
Developmental care is best when it is local. Below are links to resources in Boston, and links for people from other regions to find local care.
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