Family Guide
Extracorporeal Membrane Oxygenation (ECMO)
What to Expect During ECMO
How Your Loved One Looks While on ECMO
In the first few days of ECMO, patients may appear swollen or puffy. Critically ill patients often require a substantial amount of intravenous fluid, medications and blood products to support their organ functions during the time leading up to being placed on ECMO. As their organ functioning improves on ECMO, their body will slowly eliminate this extra fluid.
Most patients have a catheter placed in their bladder. This tube helps the team accurately measure the amount of urine the kidneys are producing.
ECMO patients typically have multiple types of IVs and usually an access line in an artery. The IV lines are used for IV fluids and nutrition, blood products and other medications needed to support their recovery. The arterial line is used to continuously monitor blood pressure and can be used to take blood samples for testing.
Your loved one will be closely monitored throughout their ECMO course. Our team uses X-rays and ultrasound to confirm proper placement of the cannulas and to assess lung and heart improvement. Blood samples are also taken regularly to ensure the appropriate amount of support is being delivered by the ECMO system.
Medications are given to keep patients comfortable and reduce pain. When safe, sedatives are minimized to allow patients to be awake and move while on ECMO.
Patients on ECMO usually require an endotracheal (ET) tube connected to a ventilator to support their breathing and aid in removing mucus from the lungs. A tracheostomy tube (trach tube) may be placed in the trachea if long-term ventilation is needed.
If needed, dialysis can be performed through the ECMO system. This process, known as continuous renal replacement therapy (CRRT), provides critical support for kidney function.
ECMO patients receive nutrition through various methods based on their condition and state of recovery. This typically includes total parenteral nutrition (TPN), or tube feedings. TPN is an IV fluid which provides hydration, essential vitamins, electrolytes and fats. Tube feedings are breast milk, formula or liquid nutrition products that are given through a tube that is placed through the nose or mouth and into the stomach.
Patients on ECMO typically receive blood-thinning medications that prevent the blood in the ECMO circuit from clotting. Because blood thinners can increase bleeding risks to patients, blood samples are taken multiple times a day to help the medical team maintain the balance between clotting and bleeding.
ECMO patients generally require multiple blood transfusions throughout their ECMO course. All blood products are rigorously tested by the blood bank to ensure their safety before being administered.
What Are the Risks of ECMO?
While ECMO can be a life-saving therapy, it comes with potential risks and complications. Before starting ECMO, a physician will discuss these risks with you and request your permission to place your loved one on ECMO.
The most common ECMO complication is bleeding. Bleeding in the brain is particularly serious. Neurological exams are performed throughout the ECMO course to monitor for any potential signs of bleeding in the brain. Babies who have an open fontanel (soft spot) will have a daily ultrasound of their brain. If bleeding in the brain is suspected in an older patient, the ECMO team will transport the patient on ECMO to have a CT scan of the brain.
ECMO specialists are highly trained to address any issues with the ECMO system. In rare instances, ECMO flow to the patient may need to be temporarily interrupted to be able to safely change components of the ECMO system.
The placement of any artificial tubes into the body carries a risk of infection. ECMO patients require many artificial tubes in their body for support. The care team continuously monitors lab values and the patient’s status for any signs of infection.
Blood clots and air bubbles can occasionally form in ECMO tubing. The ECMO team inspects the ECMO system frequently to detect and address clots or bubbles. By managing these risks, the team minimizes the chance of any interruption of ECMO flow to the patient.
In very small patients, or small patients who need ECMO for cardiac support, a cannula is often placed in one of the carotid arteries, which supply blood to the brain and neck. When ECMO is discontinued, this artery may need to be tied off, leaving the carotid artery on the other side of the neck to supply blood to the brain. Although rare, this can occasionally lead to complications such as a stroke. Your medical team will carefully monitor your loved one and take measures to mitigate these risks throughout ECMO therapy.
Who Takes Care of My Loved One During ECMO?
While your loved one is in the intensive care unit, a dedicated team of specialists will work together to ensure they receive the best possible care. This team will be made up of providers from the intensive care unit team, the ECMO team and specialty care providers. The ECMO Team Includes:
- ECMO Specialist A specially trained nurse, respiratory therapist or perfusionist who manages the ECMO pump and cannulas.
- ECMO Surgeon Places ECMO cannulas and performs any associated surgical procedures.
- ECMO Leadership Oversees and manages the extracorporeal life support program.
The ICU Team Includes:
- ICU Nurse Collaborates with the ECMO specialist and other team members to meet your loved one’s daily care needs.
- Respiratory Therapist Manages breathing support and ventilators.
- Attending Physician Leads medical care in the ICU.
- Fellow/Resident Physician Assists in patient management under the supervision of the attending physician.
Additional Team Members May Include:
- Subspecialty Physician Provides expertise in areas such as kidney, heart or brain care.
- Physical Therapist Supports mobility and physical recovery.
- Social Worker Provides emotional support and resources for families.
- Chaplain Offers spiritual care and guidance.
- Dietitian Helps ensure proper nutrition.
- Pharmacist Ensures safe and effective medication use.
This comprehensive team works collaboratively to address the complex needs of patients on ECMO.
Visiting and Supporting Your Loved One During ECMO
When your loved one is on ECMO, your presence is important. Seeing a familiar face and hearing your voice can comfort them. We encourage you to visit and spend time with your loved one. Before visiting, always check with the nurse to see if it’s safe to talk to or touch the patient. Some patients may get too excited, which could be unsafe for their recovery. The nurse and ECMO specialist can give you tips on how to interact with them in a calming way.
An ECMO patient’s room can be crowded with equipment. The team will guide you on how to stay close to your loved one while safely avoiding equipment.
- Bring family photos to decorate the room, which can make the space feel more personal.
- Play soft music to help with healing.
- Watch your loved one’s favorite TV shows together.
- Simply holding their hand can be comforting. Check with the ICU nurse or ECMO specialist to ensure it’s okay.
Supporting a loved one during recovery can be exhausting. Be sure to take breaks, get enough sleep, eat healthy meals and stay hydrated. Stay connected with your hospital social worker as well as the spiritual and palliative care teams. These specialized teams are here to support you and your loved one during this journey.
When your loved one is placed on ECMO support, the ECMO system will initially do much of the work that your loved one’s lungs and heart are too sick to do. Over time, as lung and heart function improve, the amount of support being provided by the ECMO system is slowly decreased. Weaning of ECMO support can show if the patient’s heart and lungs are recovered enough to be able to do more of the work themselves.
More About Treatment
When your loved one’s lungs and heart have recovered enough that they are receiving minimal support from ECMO, you may hear the ECMO team talk about a “trial off” or “clamp trial.” During a trial off, the tubing of the ECMO system is clamped in timed intervals to allow the opportunity to evaluate the function of the patient’s heart and lungs without any support from ECMO without physically disconnecting the patient from the ECMO system. During a trial, the staff will draw frequent labs to monitor heart and lung function. It is also very common to use heart ultrasound during a trial to measure heart function. If the lab work (and ultrasound, if used) show that your loved one has recovered enough to be able to support themselves without the assistance of ECMO, the ECMO team will talk about a plan to remove ECMO support. If the trial shows that your loved one is not ready to be separated from ECMO support, the ECMO tubing is unclamped and the ECMO flow is increased back to where it was before the trial.
Every ECMO course is different and the time that a patient requires support from ECMO varies. The medical team taking care of your loved one will walk you through what signs of improvement they are looking for each day.
When the ECMO providers are reassured by clamp trials that your loved one is recovered enough to support themselves without ECMO, a time will be set for the surgeons to remove the ECMO cannulas and physically separate your loved one from the ECMO system. The breathing tube and ventilator may still be needed. Ventilator support will be slowly decreased as your loved one improves over time.
Even with ECMO support, there’s a possibility that your loved one’s condition may not improve enough for them to survive their illness or injury. The medical team will keep you continuously updated and will let you know if they believe all possible treatments and therapies have been tried without success. If the medical team feels that ECMO is no longer serving the purpose of bridging your loved one to recovery, they’ll guide you and your family through the process of deciding when to end ECMO support.
