What Can Families Do and Understanding the Risks of ECMO

What can families do?

• You are an important part of your child’s care. You can help by:
• Talking to your child and holding their hand when it’s safe.
• Asking questions. No question is too small.
• Taking breaks and caring for yourself.
• Leaning on the care team for support, updates, and reassurance.
• Bringing in familiar items from home, such as toys, blankets,
  and pictures.

Understanding the Risks of ECMO

Because ECMO is used for children who are very sick, it does carry risks. ECMO might provide your child with the best chance for recovery when other treatments aren't enough.

Some possible risks include:

• Air bubbles: These can occur in the ECMO circuit.
• Bleeding: Medications are used to keep the blood from clotting in the ECMO machine.
• Infection: The lines and tubes used during ECMO can increase the risk of bacteria entering your child’s bloodstream, causing infection.
• Blood clots: These can form in the ECMO machine circuit despite
  careful monitoring.
• Organ Function: The brain, heart, lungs, kidneys, and other organs may need help or not work normally while on ECMO. This can be due to ECMO or as part of the illness your child has.
• Stroke: This can occur when problems with blood flow or clotting cause part of the brain to be damaged. Every child’s situation is different. Some children experience complications, while others do not. Our ECMO team watches closely for any signs of problems and responds quickly if concerns arise.

Who is caring for my child?

A dedicated care team made up of:

• Intensive Care Doctors
• Surgeons
• Nurse Practitioners
• Nurses
• ECMO Specialists
• Respiratory Therapists

This team monitors your child and the ECMO machine around the clock, adjusting care minute by minute.

Is my child improving?

While your child is on ECMO, the care team watches closely for signs of improvement. They monitor oxygen levels, blood pressure, urine output, and lab results to assess how well the heart and lungs are functioning. As your child's condition improves, ECMO support and medications can be gradually reduced to determine if your child’s body can handle more of the work on its own. When your child is ready, the team may perform a trial off ECMO.

A trial off ECMO is a short, closely watched test where ECMO support is gradually reduced to see if the heart and/or lungs can work on their own. During this trial, the care team slowly decreases the assistance provided by the ECMO machine while closely monitoring your child's condition. They check breathing, heart function, blood pressure, oxygen levels, and lab results to see how the body responds. The goal is to determine if the heart and lungs can function effectively without additional support.

If your child passes the trial off ECMO, it means their heart and lungs are functioning well enough on their own. When it is safe to do so, the care team will plan to remove the ECMO support, a process called decannulation. After the ECMO machine is removed, the care team will continue close monitoring and support to help your child continue to heal.