Questions You Must Ask Your Doctor Before Approving ECMO for Your Child
Medicine Made Simple Summary
Before agreeing to ECMO for a child, parents should ask about why ECMO is needed, what alternatives exist, the expected benefits, the risks, how long ECMO may be used, and how doctors decide whether it is helping. It’s also important to ask about survival chances, the experience of the ECMO center, who will care for the child, and what complications could occur. These questions help families understand the situation clearly, feel confident in their decisions, and stay involved as partners in their child’s care.
Why Asking Questions Matters During an ECMO Decision
Parents often hear about ECMO during one of the most frightening moments of their child’s care. A child may be struggling to breathe, in heart failure, or rapidly getting worse. Doctors may explain that ECMO is the next step to support life. In this moment, the decision feels rushed, overwhelming, and emotionally charged. Many parents later say they barely understood the words, only the urgency.
Asking questions does not delay care. Instead, it helps you understand what is happening and why ECMO is recommended. ECMO is a major intervention, and you deserve clear, honest information. This article guides you through the essential questions to ask before ECMO begins. Knowing what to ask strengthens your role as a partner in your child’s care.
Start With the Basics: Understanding Why ECMO Is Needed
1. Why does my child need ECMO right now?
Doctors should be able to explain clearly what is failing: the lungs, the heart, or both. They can describe what treatments have already been tried and why these treatments are no longer enough.
Understanding the reason for ECMO helps parents stay grounded during the decision.
2. What is the goal of ECMO for my child?
ECMO is a bridge, not a cure. The goal may be
- To allow lungs to rest
- To support the heart after surgery
- To stabilize the child after cardiac arrest
- To give time for medicines to work
Knowing the goal helps set expectations.
3. What signs will show that ECMO is working?
Doctors can tell you what improvements they expect to see first. These may include
- Better oxygen levels
- Lower ventilator settings
- Improved blood pressure
- Better heart function on ultrasound
Clear expectations help families follow the child’s progress.
Understanding Alternatives and Treatment Options
4. Are there any other treatments available besides ECMO?
Sometimes ECMO is the only option left. Other times, doctors may explain that certain medications, ventilator strategies, or procedures have already been tried. Knowing the alternatives helps families understand the seriousness of the situation.
5. What happens if we do not choose ECMO?
Doctors can explain the likely outcome if ECMO is not used. This helps parents understand the risks of declining treatment. These conversations can be emotionally difficult but provide crucial clarity.
Understanding Risks Before ECMO Begins
6. What are the most important risks of ECMO for my child?
Key risks include
- Bleeding
- Clotting
- Infection
- Stroke
- Organ injury
The care team can explain which risks apply most to your child’s condition.
7. How will the team monitor for complications?
Ask how often tests are done, what symptoms they watch for, and how quickly they act if something goes wrong. Monitoring is one of the most important parts of ECMO care.
8. Has my child’s condition increased their risk for complications?
Some underlying conditions make bleeding, clotting, or organ failure more likely. Knowing this helps prepare families emotionally and medically.
Understanding the Type of ECMO Being Used
9. Will my child receive VV or VA ECMO, and why?
- VV ECMO supports the lungs.
- VA ECMO supports the heart and lungs.
The type used affects recovery, risks, and daily care.
10. Where will the cannulas be placed?
Cannulas may be placed in the neck, chest, or groin. The location determines mobility, sedation needs, and how ECMO is managed.
Understanding the Center’s Experience
11. How experienced is this ECMO center?
Parents can ask
- How many pediatric ECMO cases the center handles each year
- What types of conditions they treat most often
- Their survival rates for similar cases
Experience matters. High-volume centers often have better outcomes.
12. Who will be caring for my child during ECMO?
A full ECMO team includes
- Intensivists
- Nurses trained in ECMO
- Respiratory therapists
- Perfusionists
- Surgeons
- Cardiologists
Knowing who is involved helps parents feel more secure.
Understanding the Plan During ECMO
13. How will you decide whether ECMO is helping my child?
Doctors look at
- Oxygen levels
- Heart function
- Ventilator needs
- Neurological status
- Blood tests
Parents should ask how often these markers are reviewed.
14. What is the daily plan while my child is on ECMO?
Understanding the daily routine—morning rounds, imaging, blood tests, medication changes—helps parents feel more involved.
15. How long do you expect my child to need ECMO?
No one can predict exact timeframes. But doctors can give general ranges based on the condition. Some children need ECMO for days; others need weeks.
16. What complications would make ECMO unsafe to continue?
Major brain injury, uncontrollable bleeding, or multiple organ failure may affect whether ECMO remains appropriate. Families deserve open conversation about these possibilities.
Understanding Weaning and Coming Off ECMO
17. How will you know when my child is ready to come off ECMO?
Doctors perform trials where they reduce ECMO support to see whether the heart and lungs can take over. Parents can ask how these trials work and what success looks like.
18. What happens after ECMO ends?
Many children still need
- Ventilator support
- Blood pressure medications
- Nutrition support
- Therapy and rehabilitation
Knowing what comes next helps families prepare for the next step.
Understanding Long-Term Expectations
19. What is the expected outcome for my child’s specific condition?
Outcomes vary by illness. Doctors can explain the best-case, expected, and uncertain outcomes.
20. What long-term effects should we watch for after ECMO?
Some children recover fully. Others may have
- Breathing challenges
- Heart weakness
- Developmental delays
- Emotional stress
- Need for therapy
Knowing this helps families prepare for follow-up.
Understanding Communication and Family Support
21. How often will we receive updates?
Daily updates from the medical team help families feel involved and informed.
22. Who can we talk to when we feel overwhelmed?
Social workers, psychologists, child-life specialists, and spiritual care providers offer emotional and practical support.
23. How can we help our child while they’re on ECMO?
Parents can
- Talk softly
- Touch gently
- Bring familiar items
- Participate in care when possible
These small actions help children feel secure.
Understanding the Limits of ECMO
24. What if ECMO does not work?
Doctors can explain what happens if the heart or lungs do not recover. This may include
- Additional surgeries
- Long-term heart support devices
- Transplant evaluation
- Or, in some cases, focusing on comfort care
Parents deserve honest and compassionate answers.
How to Approach These Conversations
Write Questions Down
It is easy to forget questions in the moment. Having a list helps families stay organized.
Ask for Explanations in Simple Terms
Doctors expect questions. They are used to explaining complex information in parent-friendly language.
Take Notes During Meetings
Families often review notes later to understand updates and decisions.
Bring a Support Person If Possible
Another adult can help listen, take notes, or ask questions parents may overlook.
Conclusion
If your child is being considered for ECMO, ask your care team these questions to ensure you understand every step of the decision. Clear communication helps you feel confident, informed, and supported during this critical moment. Your child’s team is there to guide you, answer every question, and provide compassionate care throughout the journey.
