ECMO Information for Families

It will have been explained to you that your child is very ill.  The main problem is that their lungs and/or heart are not able to do their usual job and it is felt by the medical staff caring for your child that ECMO can help.  The ECMO machine is providing support for your child’s heart and/ or lungs to allow time for them to recover.

What is ECMO?

ECMO stands for Extra Corporeal Membrane Oxygenation.  Extra corporeal means outside the body.  Membrane Oxygenator is the equipment that does the job of the lungs in providing oxygen to the blood.  Once your child is placed on ECMO the circuit will take over the work of the  heart and/or lungs so they can be rested.

In summary the ECMO machine is a temporary artificial heart and lungs.

Some ECMO History

ECMO was first used successfully in the USA in 1976 and was introduced into New Zealand in 1993.  We currently provide ECMO support to 25 to 30 patients a year, of whom roughly half are children (including newborn babies). 

Starship and Auckland City Hospitals are the only centres in New Zealand that provides ECMO support.

Who needs ECMO?

Babies, children and adults with very severe lung disease that do not respond to the usual treatment of mechanical ventilation, medication and high concentration oxygen.

Babies, children and adults with severe heart failure, either before or after heart surgery.

ECMO can only help those whose lung and/or heart disease is reversible within about one to four weeks.

How does ECMO Work?

Blood from veins (the dark blood with little oxygen) is removed from your child via a tube (cannulae) that is placed in a large vein in either the side of the neck or the groin.  This tube will be inserted in either the intensive care during a short operation at the bedside or in the operating theatre.  An anaesthetic and pain medication is given so that no pain is felt.  A second tube is placed into an artery in the side of the neck or the groin to return the blood.

The pump, which acts as an artificial heart drives the blood through the rest of the circuit.  The blood moves through the oxygenator where carbon dioxide  is removed and oxygen is picked up.  After leaving the oxygenator the blood is warmed before being returned to the body.  This oxygenated blood will appear bright red in colour.  This process is continuous while  your child is on ECMO.

The mechanical ventilator will still remain but all the settings will be lower than they were before as the ECMO circuit is doing most of the work.

Types of ECMO

There are two types of ECMO—VA (venous-arterial) and VV (veno-venous).

VA—a cannulae is placed into a vein and an artery.  This provides support for both the heart and lungs.

VV—a cannulae is placed into one or two veins.  This provides support for the lungs only.

What are the risks of ECMO?

Anyone who requires ECMO is extremely ill and would normally die without it.  However there are risks associated with ECMO support that you need to be aware of.  In giving you this information we are not suggesting that they will happen but there is a possibility.

It is important to stop the blood from clotting in the circuit and to do this we need to thin the blood with a drug called heparin.  Sometimes this thinning of the blood can lead to bleeding problems.  Blood tests (ACTs) are done every hour to check how fast the blood is clotting.  The most common example of this is at the site of the ECMO cannulae or any operation site.

Whenever a foreign tube is inserted into the body there is an increased risk of infection.  Signs of infection are watched for very closely and antibiotics will be given if necessary.

Neurological problems (involving the brain) can occur.  These can be due to bleeding into the head or due to the very severe illness before ECMO starts.  We look very carefully for sign of any brain problems.

Every safety measure is taken with regard to the ECMO circuit but a malfunction can occur in various ways.  These problems include air bubbles, blood clots, leaks and failure of the oxygenator.  If any of these problems occur immediate action will be taken to ensure that your relative is kept as stable as possible.

How long will my child be on ECMO?

The average length of ECMO treatment is 10 days but some will need a longer period of treatment.  The length of treatment will vary from person to person and will depend on the type of heart or lung problem.

In some cases it becomes clear that ECMO is not helping and if this is the case we will fully discuss the problems with you.

How do we know when it is time to come off ECMO?

When your child is first placed on ECMO the flow through the pump is kept high so that the machine does most of the work of the heart and/or lungs.

As there are signs of improvement the ECMO flow will be decreased and the heart and/or lungs will start doing more of the work.  Improvement will be measured by blood tests, improved chest x-rays and improved heart function.  When this is seen the ECMO flow will be gradually reduced to a stage where we have a “trial off” ECMO for a period of a couple of hours.

If during this time your child’s condition is stable then ECMO support is no longer required and the cannulae will be removed in a small bedside operation.  At this time they will still require full mechanical ventilation and medications which will slowly be removed as they improve.

The ECMO Team—Who’s who?

Your child needs highly specialised care, which will be provided by a variety of people.  These will include Intensive Care Specialists, cardiac surgeon, specialised ECMO nurses, physiotherapists, social workers and a perfusionist.

Intensive Care Specialists: specialise in intensive care medicine.  These doctors will co-ordinate the care that your child will receive while on ECMO.  Starship currently has seven intensive care specialists.

Cardiac Surgeon:  will be the person responsible for inserting the cannulae into the veins and/or artery.  They will continue to be a part of the health care team caring for your child while on ECMO.

ECMO Nurse Specialists: a small group of nurses have been specially trained to manage and operate the ECMO circuit.  They will be present at the bedside 24 hours a day and will assist in the decision making process’s along with the rest of the team.  They will also work in with the bedside nurse to provide ongoing care.

ICU Nurse:  specially trained ICU nurses will be at the bedside 24 hrs to provide ongoing care to your child.

Perfusionist: a perfusionist will oversee the running of the circuit and assist in troubleshooting.  Perfusionist are usually responsible for the heart-lung bypass machines used in heart surgery and are specially trained in ECMO management.

You will also be seen by the social worker to see if they can be of any support for you and your family.

What process will my child go through?

Your child will need to be assessed prior to going onto ECMO.  Babies need a head ultrasound and a cardiac ultrasound (ECHO) to ensure that  there are no problems that could indicate that ECMO is not appropriate.

While on ECMO your child will be reviewed daily by the Intensive Care Specialist, the surgeon, the perfusionist and the nurse.  Their condition will be monitored closely and a variety of tests will be performed.  These include chest x-ray, head ultrasound, cardiac echo, chest ultrasound and blood tests to assess heart and lung function and recovery.

If any other investigations are thought to be necessary these will be discussed with you at the time.

While on ECMO your child will remain in the Intensive Care Unit and may be looked after by one or two nurses: one nurse is responsible for the ECMO circuit and the other nurse for the care of your child.  Experienced ECMO nurses may care for both the circuit and the patient.

ECMO patients require many blood transfusions while they are on ECMO.  Our blood bank does many tests to ensure that the blood is as safe as possible.

Pain and sedation

We allow children on ECMO to be as awake as possible without subjecting them to pain or anxiety.  This also allows us to monitor their neurological status more effectively.

Medication will be given to keep them comfortable and free from pain.  They will be continually assessed to ensure that adequate amounts are administered.  Sometimes we may need to keep patients more sleepy and give them medication to keep them very still by using drugs which stop muscle movements.

Feeding

While on ECMO feeding may occur via a tube that passes into the stomach called a naso-gastric tube.  If the food is not being absorbed well then they will be fed through a vein with a special feed.

Physiotherapy

Your relative will continue to be seen by the physiotherapist while on ECMO.  They will assess the lungs and see if any secretions are present.  The physiotherapist will explain their involvement in your child’s care in more detail when they see you.

What is the parents’ role during ECMO?

Parents, brothers, sisters and other family members play an important role in your child’s care and recovery.  Visiting is strongly encouraged and you are welcome to visit at any time.   Family friends are welcome to visit if accompanied by one of the parents.  No more than two people may visit at the same time due to space restrictions and to ensure that staff are able to safely respond to any emergencies.

While on ECMO there are many things that you can do to help with their care such as cleaning their eyes, making sure their mouth is kept moist,  changing nappies, massaging their limbs and helping with a wash.

Although you will not be able to pick your child up, touch and the sound of your voice remains very important.  This helps to provide much needed comfort.  Your child maybe too sleepy or unable to open their eyes, but it is still important for you to interact with them.  Toys and photos around the bed space are most welcome along with tapes and story reading.

For mothers that are breastfeeding, we encourage you to use the breast pump and save the milk by freezing it.  It can be stored for use later after your child is off ECMO.

It is important that you do not forget to look after yourself during this stressful time, making sure that you eat well and get some rest.  Don’t feel that you have to be at your child’s bedside all the time.

We understand that this is a stressful time for you.  Please feel free to ask us any questions.

Follow up

Once off ECMO arrangements may be made to transfer your child back to their local hospital.  They may still need some time in an intensive care unit before they are fully recovered.

The care you receive from your local hospital and GP maybe different from the care you receive while in Intensive Care and it can seems scary leaving what appears to be a controlled environment.  It is important however for you, your child and your family to get back to a normal routine and environment as soon as possible.

Glossary

Below is a list of words and phrases that maybe used by the healthcare team who will be looking after your child.

ACT	Activated Clotting Time - a test that tells us how long it takes for the blood to clot.
Aorta	The large artery that carries oxygenated (red) blood from the heart to the body.
Arterial Blood Gas	A small amount of blood taken from an artery and tested to determine the amount of oxygen and carbon dioxide.
Cannulae	A plastic tube used for the draining and return of the blood in the body.
Chest Drain	A tube placed into the space between the lung and the chest wall with evacuates air or fluid.  Used to treat a collapsed lung.
Decannulate	To remove a cannulae.
De-oxygenated blood	Blood which is very low in oxygen level.
Echo	Echocardiogram, similar to ultrasound to look at the heart to see how well it is functioning.
Heparin	A drug used to prevent blood from clotting.
Head ultrasound	A scan of the head to look for bleeding.  Ultrasound can be used to examine the internal organs.
Meconium	The first bowel motion of the newborn baby, it is black and sticky.
Meconium aspiration	Before or during the birth, small amounts of meconium become lodged in the lungs preventing the lungs from working.
Membrane pressures	These are the pressures either side of the oxygenator.
Nasogastric tube	A tube that is passed into the stomach and used for feeding.
Neuro	Relating to the brain.
Oxygenator	Part of the ECMO circuit which removes carbon dioxide from the blood and supplies oxygen to the blood.
Perfusionist	A person with specialised knowledge and training in cardio-pulmonary bypass (heart/lung machine).
Platelets	Blood cells which prevent bleeding.
Pump	The device the drives the blood through the circuit.
Trial off	Temporary removal from ECMO to see if the lungs are recovered enough to provide support.
Ventilator	Mechanical machine that is used to put oxygen into the lungs via a tube in the windpipe.
Weaning	The process of decreasing the ECMO blood flow as the heart/lungs improve.