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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. 

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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.

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.

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.


Sick children are still developing children, and they do best when they are supported across developmental domains.

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.

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.

Ahmed, H., & VanderPluym, C. (2021). Medical management of pediatric heart failure. Cardiovascular diagnosis and therapy, 11(1), 323.https://pmc.ncbi.nlm.nih.gov/articles/PMC7944205/
Crossland, D. S., Van De Bruaene, A., Silversides, C. K., Hickey, E. J., & Roche, S. L. (2019). Heart failure in adult congenital heart disease: from advanced therapies to end-of-life care. Canadian Journal of Cardiology, 35(12), 1723-1739.https://www.sciencedirect.com/science/article/abs/pii/S0828282X19311080
Elkins, P. D., & Roberts, M. C. (1983). Psychological preparation for pediatric hospitalization. Clinical Psychology Review, 3(3), 275-295.https://www.sciencedirect.com/science/article/abs/pii/0272735883900168
Hope, K. D., Bhat, P. N., Dreyer, W. J., Elias, B. A., Jump, J. L., Santucci, G., ... & Puri, K. (2021). Pediatric palliative care in the heart failure, ventricular assist device and transplant populations: supporting patients, families and their clinical teams. Children, 8(6), 468.https://www.mdpi.com/2227-9067/8/6/468
Melamed, B. G., & Ridley-Johnson, R. (1988). Psychological preparation of families for hospitalization. Journal of Developmental & Behavioral Pediatrics, 9(2), 96-102.https://journals.lww.com/jrnldbp/_layouts/15/oaks.journals/downloadpdf.aspx?an=00004703-198804000-00010&casa_token=XbTrI-gRO4cAAAAA:gJdl02tRvPnrAEvEFWAShfCQWYbNAKKkYDUQBhMGYIi2W-UbSYmkU9BL6NFnYLHRdg1aoVrac_7546QyZ7XxGcY
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