Supporting Children on ECMO
Ages 0 - 24
Extra-corporeal membrane oxygenation (ECMO) is an advanced therapy that can sustain the life of a person in heart failure. Having a child on ECMO is usually very stressful for the whole family, but it can be easier when family members know what to expect. Keep reading to learn more about having a child on ECMO, and how to support the wellbeing of everyone in the family.
In this section
What is 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.
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Preparing for ECMO
Sometimes, a family has warning that a child will be put on ECMO. Other times, the decision to put a child on ECMO happens very quickly, and the family may have little warning.
When families have time to prepare, they can:
Ask who will be on the ECMO team
Ask the ECMO team to show and tell them what to expect
Keep asking questions until they understand
Figure out who at the hospital can support the family during the ECMO treatment
Palliative care?
Social Work?
A chaplain?
Child LIfe?
A parent group?
Consider finding a therapist for each person in the family, to manage the thoughts and feelings that come with having a sick loved one
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Preparing the child for ECMO
If a child or teen who can talk and understand is going to be receiving ECMO, families and hospital staff can work together to prepare the child. They might say:
Their family, doctors, and nurses care about them very much and want them to get well
Right now, their heart and lungs need a rest to get better
A machine is going to do the work of their heart and lungs while their body rests
Doctors will give them medicine to keep them comfortable and asleep
Their family or someone else they know will be by them the whole time
When they wake up, their heart and lungs will be working better
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When a child is on ECMO
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.
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Self-care during ECMO
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When a child with a heart defect is on ECMO, family members may struggle to think about anything else. However, it is important for everyone for everyone in a family to take care of themselves.
At a minimum, each person in a family should try to:
Sometimes leave the room or hospital, with someone they trust watching over their child
Eat real meals
Drink enough water
Take showers
Talk to someone they trust about their thoughts and feelings
Check in with other family members about what everyone needs, and who can help
Ask for help if they feel overwhelmed or hopeless
Hospital social workers, chaplains, Child Life Staff, psychologists, and palliative care providers are available to help support parents, siblings, and other family members.
Coming off 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.
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After ECMO: finding a new baseline
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)
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Therapy and recovery after ECMO
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
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ECMO in context
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.
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