Supporting Children on ECMO

An ECMO machine does the work of a person’s heart and lungs, so that their real heart and lungs can rest. The machine pumps blood outside of the body, where it removes carbon dioxide, and adds oxygen.  Then, it warms the oxygen-rich blood, and pumps it back inside the body. 

Patients are often sedated while ECMO.  Sometimes, they are asleep the whole time. Other times, they are awake for part of the time.  Usually, patients are ventilated: they have a tube down their throat that is connected to a machine that breathes for them. 

ECMO is not a long-term solution to heart failure, and treatments usually last for days or weeks. Doctors think of ECMO as a “bridge” that carries patients to either recovery, or to a heart transplant.

When a person is on ECMO, they are given medicine to keep them still and calm.  Most people never fully wake up while on ECMO.  The medical staff gives them medicine to make sure they stay comfortable.

People on ECMO can be aware of who is around them.  They feel reassured when they know their loved ones are nearby. 

Family can often support their child on ECMO by:

• Talking

• Singing

• Reading aloud

• Playing music

• Gently touching

Family members can ask nurses and Child Life staff how they can offer care to their child on ECMO.

Many children with heart defects stay on ECMO for awhile, and then their bodies become ready to come off it.

Some people with heart defects stay on ECMO until their own heart is ready to work on its own.  For these patients, when they come off ECMO, they remain on a breathing machine (ventilator) until they are ready to breathe on their own.  The doctors and nurses carefully monitor them closely to keep them safe and comfortable.

Other people with heart defects stay on ECMO until they receive a heart transplant.  Most of these patients will no longer need ECMO after their heart transplant surger

Young people recovering from ECMO usually need to stay in the hospital for weeks or months.  They often require multiple types of therapy to become as healthy and strong as they can.

Developmental delays and disabilities are common in young people who have had ECMO treatment.  After ECMO, caregivers may notice differences in how a young person:

• Uses their body

• Eats and drinks

• Thinks, learns, and understands

• Talks and listens

• Expresses feelings

• Connects with other people

As soon as a young person is feeling better after ECMO, they should be evaluated in order to understand their strengths and needs.  Families should talk with their doctors about where and how to find a good evaluation. 

In most cases:

• A physical therapist should evaluate how the young person uses their arms, and legs (all ages)

• An occupational therapist should evaluate how the young person uses their hands, and how they do daily tasks (all ages)

• A speech/language pathologist should evaluate how the young person communicates, and also how they swallow and eat (all ages)

• A psychologist should evaluate how the young person focuses, feels, thinks, learns, remembers, and understands (all ages)

• A psychologist or educator should evaluate how the young person learns reading, writing, and math skills (ages 4 and up)

After ECMO, patients need rehabilitation and therapy. Families should talk with their doctors about the therapies available from a hospital.

In addition to hospital treatments:

• Babies and toddlers (ages 0, 1, 2) should be referred to Early Intervention (EI), and receive all available services

• School-age children (ages 3-18 or 3-22, depending on need) should receive services through their school district’s Special Education program

ECMO is an amazing tool that can extend the lives of many children, though having a child on ECMO can be immensely challenging. Parents should know that they remain their children's primary caregivers when when a child is on ECMO: they can participate in care, show love and affection, and make decisions that are best for the family.

This content was reviewed by staff at Boston Children's Hospital.

Care is usually best when it is local. Families local to Boston can seek support from the Transplant Program, the Cardiac Neurodevelopmental Program, Child Life, Spiritual Care, Social Work, and/or the advanced care team. Families in other regions can click below to find local care.

Links to additional sources of support are provided below. These links 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.