For Parents and Family Members

Every part of your body needs oxygen to survive. Normally, the heart pumps blood to the lungs where oxygen is added and carbon dioxide (a waste product) is removed. After adding oxygen, the blood travels back to the heart so it can be pumped to the entire body. ECMO can support the work of the heart and /or lungs when they are too sick to function on their own and when all other forms of heart and lung support have failed. ECMO can be offered to children of all ages from infancy to young adulthood. It does not fix the underlying condition but instead provides support while the child's own heart and lungs are allowed to rest and heal.

Conditions in infants and children that may require ECMO include:

• Congenital diaphragmatic hernia
• Congenital heart disease
• Meconium aspiration syndrome
• Persistent pulmonary hypertension of the newborn
• Pneumonia
• Sepsis

During ECMO, blood is removed from the body through a sterile plastic tube inserted into a large vein in the neck, chest or leg. The blood is pumped by a machine through an artificial lung (the membrane oxygenator) where oxygen is added to the blood and carbon dioxide removed. The blood is then returned to the body either through the same tube or a second sterile plastic tube inserted into a large blood vessel in the neck, leg, or directly into the chest.

As the heart and lungs recover and are able to perform the necessary functions to support life, the amount of ECMO support is slowly reduced. The medical team taking care of your child will determine when he/she is ready to be removed from ECMO.

Your child will have one or more sterile plastic tubes (cannulae) surgically inserted into the large blood vessels in the neck, leg or chest. These tubes are connected to the ECMO circuit and will carry blood to and from the body.

While on ECMO, your child will continue to be connected to the ventilator (breathing machine) through his/her breathing tube. All of the tubes and lines that were needed before ECMO will also remain in place.

During the first few days on ECMO, your child may become swollen. This swelling is a side effect of ECMO and the underlying illness and will go away after ECMO is stopped.

The greatest risk of ECMO is bleeding. This is because a medication called heparin is given to your child to prevent clots from forming in the tubing or the artificial lung. The bleeding can occur inside or outside of the body. While children of all ages are at risk for bleeding inside the brain, this risk is greater in infants. While on ECMO, a small amount of bleeding is normal. Commonly, it occurs at the site where the tubes enter the body. Other risks include infection, kidney failure, or failure of the heart and/or lungs to recover from the initial illness. The longer an infant or child remains on ECMO, the greater the risk of complications.

Neurologic (brain) or developmental problems can occur. Many of these problems are due to the severe illness that caused your child to be placed on ECMO. Children are monitored closely for any sign of brain injury while on ECMO, after ECMO is stopped, and even after your child has completely recovered from his/her initial illness.

A team of specially trained medical and nursing professionals will take care of your child. Members include attending physicians (neonatologists or pediatric intensivists) advanced practice nurse practitioners, physician assistants, residents and fellows, registered nurses, ECMO perfusionists, respiratory therapists, cardiologists, pediatric surgeons, and pediatric cardiothoracic surgeons.

Typically, ECMO support is needed for days to weeks. Every child is different and the length of support is usually dependent on the condition which made it necessary to place him/her on ECMO. Once the heart and lungs have healed enough, he/she will be removed from ECMO. Usually, there is a short trial during which the ECMO machine is turned off but the plastic tubes are not removed. This is done to ensure your child is ready to come off ECMO before a surgeon removes the tubes. If a major complication occurs or if the underlying condition is not improving, it may be necessary to remove your child from ECMO, even if he/she is not ready. The medical team will make the decision when to remove your child from ECMO.

Once the medical team determines that it is time to stop ECMO, the tubes are removed by a surgeon. Depending on your child's condition, he/she may still need the ventilator and medications during the recovery period. Recovery is different for everyone but will likely take weeks rather than days.

Depending on your child's medical condition, he/she may need to be followed by specialists such as pulmonologists (lung doctors), cardiologists (heart doctors), and/or neurologists (brain doctors). Your child will be evaluated with a MRI of the brain. It will also be necessary to monitor his/her hearing and development closely after your child goes home.