A FAMILY GUIDE FOR NEONATAL ECMO

Dear Parent,

This booklet was written to help you and other family members better understand ECMO. A glossary of terms used is on the last page. We want you to feel free to ask any questions you may have while your baby is on ECMO. Information specifically about your child will only be given to you as a parent. We will do our best to make sure you understand what is happening and will not intentionally keep information from you.
Please call at any time if you have questions or just to “check” in. We encourage you to visit and talk to your child. The Ecmo nurse will show the best ways to touch and comfort your baby. The unit is open to visitors 24 hours a day. You must first check in at the desk to see if you can visit. Please let your nurse know if you desire visitor restrictions. If there is a procedure happening in the room, you will have to wait until it is completed. Nursing report starts at 7:30 am, 3:30 pm, 7:30 pm and 11:30 pm. You will not be allowed to visit during these times.
Visitors are limited to two at a time. Siblings ages 2-14 are welcome to visit after they have had a health screening. We understand this is a very stressful time for you and you may not remember all of our explanations. Please don’t be afraid to ask us the same
question more than once.

What is ECMO?

ECMO stands for Extracorporeal Membrane Oxygenation. ECMO is a special procedure
that allows sick or injured lungs the opportunity to rest and get better. When lungs are sick or injured they are unable to provide oxygen and remove carbon dioxide (a waste product) as they normally would.
ECMO is similar to the heart-lung bypass used in the operating room but is used for longer periods of time. Once your baby is placed on ECMO, the circuit will take over the work of your baby’s lungs. Oxygenation and ventilation (removal of carbon dioxide) will be done for your baby so the lungs can rest.

How does ECMO work?

Plastic tubes (cannulae or catheters) are surgically placed in your baby’s neck. These tubes allow blood to be taken from your baby and passed through an artificial “lung” where oxygen is added and carbon dioxide removed. The blood is then warmed and returned to your baby through the plastic tube (See Figure 1).

THE ECMO CIRCUIT

Are there different types of ECMO?
Yes. There are two different ways for ECMO to support a patient. The first method is
called veno-arterial or VA bypass. VA ECMO will support the heart and lungs. This requires two cannulae - one in the jugular vein and one in the carotid artery. They are surgically placed through the right side of the neck. The second method is called veno-venous or VV bypass. This is used for lung support only. This type of ECMO requires only one catheter to be surgically placed through the right side of the neck We have recently started placing the VV cannulae without a surgical incision. This method is called “percutaneous cannulation”. When the patient is ready to have the cannulae removed it is pulled like an IV and pressure is held 20 minutes. With this type of cannulae placement the jugular vein is NOT tied off. This method is used most often for venovenous ECMO Cannulae are placed through the right side of the neck because ECMO requires the use of big blood vessels that are near the heart. Once the artery or vein has been used for ECMO it will be tied off (ligated) except in special circumstances. Your baby should develop a backup system (called collateral circulation) for blood flow on that side. We will always try to use VV ECMO if possible (no heart support needed) so that the carotid artery does not need to be tied off. (see Figures 2, 3)

VenoVenous Figure 3.
VenoArterial Figure 2.

What is the goal of ECMO?

By taking over the work of the lungs, ECMO allows the lungs to rest. ECMO does not heal the lungs but gives them time to rest and recover. ECMO will be used only when other methods of support have been tried and your baby has not improved. Once on ECMO the ventilator (breathing machine) settings will be decreased to levels that will not damage the lungs. When the lungs have healed and can work on their own, ECMO will be stopped. This process usually takes 3-7 days.

Who goes on ECMO?

When a baby is transferred here for ECMO our physicians will carefully monitor the baby’s needs. Not all babies sent here for ECMO will need this treatment. Some will have medical problems that ECMO cannot help. We want to make sure your baby does not have any problems that ECMO could make worse or not help at all. Your baby will usually have a cranial ultrasound study and a cardiac ultrasound study before being considered for ECMO. The cranial ultrasound uses sound waves and lets us look at the brain to make sure there has been no bleeding around the brain. We will also do this test after your baby is on ECMO. The cardiac ultrasound study lets us look at the heart to make sure it is normal. The cardiac ultrasound also helps us to decide which type of ECMO to use (VA or VV). Depending on these test results and if it is determined that your baby would benefit from ECMO, the following will take place:
1. Your baby will receive medicine for pain.
2. Your baby will receive medicine which will temporarily restrict movement.
3. A small cut (incision) will be made in the neck by the surgeon.
4. Two cannulae (for VA) or one cannula (for VV) are placed. One cannula is placed in the jugular vein and sits in the right atrium of the heart. The other, if needed, is placed in the carotid artery and sits in the aorta.
5. The cannulae are connected to the ECMO circuit, which was filled with blood (primed)
while the cannulae were being placed.
6. The ECMO machine is turned on.
7. Your baby is now on ECMO.

This criteria is followed for those babies who require a surgical incision (cut) to place the cannulae. The procedure for the percutaneous cannulae is the same except no surgical cut is made.

What happens on ECMO?

After your baby is stable on ECMO, the ventilator (breathing machine) settings will be turned down to “rest” settings. This allows the lungs to rest without any damaging effects of too much oxygen or pressure from the ventilator. All ECMO patients have a daily routine. This includes a chest x-ray each morning, weight and bath, blood work (labs) every 8 hours, and constant monitoring of vital signs. All of the blood work is drawn off the ECMO circuit. Your baby will not be “poked” by a needle while they are on ECMO. We let the babies rest as much as possible while they are on ECMO. As the lungs start to heal the amount of ECMO support is reduced. When your baby shows signs of getting better we will “trial off” ECMO. The ventilator “breathing machine” is turned up to
support and assist the baby while the ECMO cannulae are clamped for the trial. If the lungs have healed enough to support your baby’s needs, then ECMO will be stopped. We will not take your baby off ECMO until the child is ready. Once the decision is made to stop ECMO, the surgeons will be called to remove the tubes from the baby’s neck (decannulation). Your baby will then be off ECMO.

Who needs ECMO?

ECMO for newborns is usually for patients with the diagnosis of Meconium Aspiration Syndrome (MAS), Persistent Pulmonary Hypertension of the Newborn (PPHN), Respiratory Distress Syndrome (RDS), Congenital Diaphragmatic Hernia (CDH), Pneumonia, or Sepsis. Your physician will explain your baby’s diagnosis to you and just what it means.

What are the risks?

The greatest risk for ECMO patients is bleeding. Heparin (a blood thinner) is necessary so that the blood does not clot in the tubing or in the baby. Bleeding can occur anywhere in the body but is most dangerous when it occurs in the brain. We will intermittently check for this by cranial ultrasound. There is also a chance that small clots may be introduced into the blood stream of the patient. The ECMO circuit is closely monitored at all times by a specially trained professional. It is still possible, however, that a portion of the circuit could fail. The ECMO specialists are trained for such emergencies. You will be kept informed of any problems that may occur.

What about blood transfusions?

ECMO patients require many blood or blood product transfusions while they are on ECMO. Each baby will have different needs. Our blood bank does many tests to make sure the blood is as safe as possible. Even with this testing there is still a small chance of a blood transfusion problem.

Medications
Pain medication is given routinely to prevent any discomfort that may be felt. Your baby
will be able to look around and move. Heparin is the drug that keeps the blood from clotting normally. Heparin is first given when the cannulae are placed and will be given continuously while your baby is on ECMO. The ECMO specialist monitors the amount of Heparin in the blood very carefully and makes changes accordingly. Antibiotics are given to treat existing infections or to prevent infections. Sometimes a patient’s blood pressure or heart needs some help and medications will be ordered for this purpose. Some of the names you might hear are Dopamine, Dobutamine, Inocor, or Epinephrine.

What about nutrition?

While on ECMO a special solution called TPN will be given. This fluid has the vitamins and electrolytes that your baby needs. Your child will also receive a solution called lipids which is a fat solution that the body needs to maintain calories. These will be given into the ECMO circuit through an IV line.

Can I still breast feed?

Yes. It is important for you to continue to pump your breasts and freeze the milk. There are breast pumps available to use while at the hospital. The hospital also rents electric pumps for use at home. Once your baby is off ECMO and ready, the milk will be available. If you need assistance with this please ask your baby’s nurse for help. Your baby will not actually be able to breast feed until he/she is off the ventilator. However, we are able to feed the infant breast milk through a tube that goes into the stomach. Many
ECMO babies are “poor feeders”. They have some difficulty sucking and swallowing but this will go away in time.

Who takes care of my baby?

The Holden nurses are specially trained to manage sick babies. The ECMO specialist is a specially-trained Registered Respiratory Therapist or Registered Nurse who has prior experience in intensive care. Your baby will have an ECMO specialist at the bedside at all times. The ECMO physician is also specially trained in taking care of sick babies and babies on ECMO. Other physicians or specialty areas may be asked to help in the care of your baby. There is a social worker as well as a chaplain available to you should you need their assistance.

What happens after ECMO?

A typical newborn course of ECMO ranges from three to seven days. Some patients require a longer amount of time. Patients that typically need extra time are those with Congenital Diaphragmatic Hernia. Each baby is different and dictates how long is needed to get better. Once your baby is off ECMO ventilator support will still be needed. It may take a few days or weeks before your baby is ready to come off the ventilator. Again, each baby will respond differently in this area.

Will my child need follow-up care?

Yes. Even though the heart or lung disease is better now, your baby may have had significant exposure to low oxygen levels prior to ECMO. This places your baby at higher risk for developmental problems. These potential problems can be determined only as the child grows. We suggest that your baby be brought to our newborn clinic or
one closer to your home. Someone from Holden will talk to you about follow-up care before you leave our hospital. They will be able to answer your questions about this process.

Is ECMO a new procedure?

The University of Michigan is the oldest and largest ECMO program in the world. Dr. Robert Bartlett is the director of our program and is responsible for the development of neonatal ECMO.They have been performing neonatal ECMO here since 1981.

ECMO TERMS

ECMO: Extracorporeal Membrane Oxygenation
ACT: Activated clotting time - a test that measures how many seconds it takes for the blood to clot.
CANNULAE: Tubes that are placed by the surgeon into the blood vessels in the neck.
DECANNULATE: To remove the cannulae.
PERCUTANEOUS CANNULATION: Placing the cannulae without a surgical incision.
MEMBRANE OXYGENATOR: This is the artificial lung that adds oxygen and removes carbon dioxide.
ECMO FLOW: The amount of blood that is being moved through the circuit per minute.
ECMO PUMP: The pump that controls how much support is being given to the patient. This pump acts like an artificial heart.
BLADDER BOX: Safety system that alarms when the amount of blood in the circuit needs to be checked.
HEAT EXCHANGER: This is where the blood is warmed before it is returned to the patient.
THE ECMO TEAM: This team is composed of speciallytrained Registered Respiratory Therapists, Registered Nurses, and Physicians.
VA TRIAL OFF: A test period off ECMO. The ventilator settings are turned up and the ECMO circuit is clamped. This will show us how the baby’s lungs are healing.
VV TRIAL OFF: The oxygenator is capped so that the baby’s lungs must add oxygen and remove carbon dioxide on their own.
VENOARTERIAL BYPASS (VA): This is the type of ECMO that gives heart and lung support. Two cannulae are used, one in the jugular vein and one in the carotid artery.
VENOVENOUS BYPASS (VV): This type of ECMO gives lung support only. One cannula is used in the jugular vein.

All about ECMO

Dear Moms and Dads:
This is probably one of the most difficult times in your life. Your child is critically ill and has been placed on ECMO. The ECMO Team is a specialized team consisting of attending physicians, surgeons, fellow, residents, perfusionists, ECMO specialists registered nurses and respiratory therapists. We will be providing around the clock care to your child in the Intensive Care Unit setting . Please do not hesitate to ask any questions. Remember there are no questions that are too big or too small! We are here to support you and most of all, to provide the best possible care to your child. This booklet is dedicated to all parents and families whose lives have been changed by ECMO.

SOME MORE QUERIES ON ECMO

1. What does ECMO/ECLS stand for?
   ECMO stands for ExtraCorporeal Membrane Oxygenation; ExtraCorporeal means "outside the body", Membrane is the place where carbon dioxide is exchanged for oxygen, and Oxygenation is the active process of giving oxygen. ECLS stands for Extracorporeal Life Support. These two terms are used interchangeably when talking about ECMO
   
2. What is ECMO?
   ECMO is a life saving technique that is being used to save children around the world every year. The procedure involves inserting plastic tubes called cannulas into the vein and artery of the neck and/or groin. Once connected to the cannulas, the infant's blood flows by gravity outside of his body throughout the ECMO tubing or circuit. It, then, flows through a roller pump, which are the heart of ECMO and the temporary heart of the patient. The blood is then pumped into the membrane which we call the oxygenator. The oxygenator works like artificial lungs. It provides oxygen and removes carbon dioxide, thus allowing the infant's heart and lungs to "rest" while natural healing occurs. The blood is then warmed and returned to the body. In essence, the ECMO circuit mimics your baby's natural heart and lung functions.
   
3. What are some of the reason babies/children are put on ECMO?
   There are many reasons a baby can be placed on ECMO. Some of the most common reasons are: Meconium aspiration at birth, respiratory failure, congenital diaphragmatic hernias. Children involved in trauma including drowning, accidents, hydrocarbon ingestion (lighter fluid, turpentine), sepsis or infection, and congenital heart problems are also possible candidates for ECMO
   
4. Who can I talk to about ECMO?
   There are many parents who have gone through the experience of ECMO. Your nurses will provide you with additional information about the support groups. Social Services, Patient/Family Representatives, and Chaplain are also available. We understand the importance of providing any means of support to you and your family, as this is an overwhelming and difficult time
   
5. How long will my child be on ECMO?
   The length of therapy is different for each child. Your child's diagnosis, individual response, and progress are all factors that affect the amount of time that he/she is on ECMO. These factors will be evaluated by the physicians on a daily basis and will determine when your child is ready to be weaned and eventually taken off ECMO. The average therapy is usually four days, but the length of time on ECMO varies from patient to patient.
   
6. Can I talk to and touch my child while on ECMO?
   Yes, it is very important for you as parents to bond with your baby. Although your child is receiving medication for sedation, he/ she can still hear you and knows your voice. We encourage you to touch and stroke your baby softly. Soft music or a tape of your voice can be played at the bedside and is encouraged
   
7. Is my child's heart still beating while on ECMO?
   Yes, your child's heart is still beating while on ECMO. However, most of the blood that was going through his heart is now going through the ECMO pump. The ECMO pump is now doing a great part of the work of the patient's heart.
   
8. Why is my child not breathing while of ECMO?
   A special part of the ECMO machine, called the membrane oxygenator, is doing the work of your child's lungs. It is like an artificial lung. Your child is also on a breathing machine called a ventilator that helps to inflate and deflate the lungs just like if your child was breathing on his/her own. Remember, while on ECMO, the patient's heart and lungs are resting, so they can successfully heal and recover
   
9. Why does my child look so swollen?
   Your child's head, face and sometimes the whole body will become swollen while on ECMO. We carefully move the patient's position throughout the day paying very close attention to the special cannulae (tubes) in the patient's neck. This lack of movement causes fluid to accumulate in different parts of the body, especially the head and face. We also must give IV fluids, which cause your child to look puffy
   
10. Is my child in pain during ECMO?
    Special medications, such as Fentanyl or Versed are often given to decrease and ease pain and discomfort. Another medication called Norcuron may also be given to prevent your child from moving or becoming agitated. Though it may be difficult to see your child immobile, it is important that you understand that these are all part of treatments used to maximize ECMO therapy and promote healing
    
11. Will my child receive blood while on ECMO?
    Yes, your child may receive blood or blood components such as platelets, fresh frozen plasma or cryoprecipitate. The physician will write orders daily to keep your child's blood count (hematocrit,platelet, hemoglobin counts) in a healthy range. Blood products will only be given when it is necessary. Blood and/or blood products will not be given unless your consent is obtained. If you wish, you may arrange through the Blood Bank for family and friends to specifically donate for your child; ask your nurse or the ECMO Coordinator if you are interested in blood donation.
    
12. Will my child catch the AIDS virus on ECMO?
    All blood products given to your baby are carefully screened for the AIDS virus, as well as other viruses and infectious diseases. Because of improved screening procedures by the Blood Bank, every effort is made to make sure that the blood given to your child is the safest
    
13. Why is my baby on a special bed?
    The ECMO warmer bed is a special bed, which is used during ECMO therapy. The warmer is equipped with a radiant heat, which helps keep your baby warm. It is elevated so that the blood will flow easily from the baby into the ECMO pump
    
14. What is Heparin and why is it used on ECMO?
    Heparin is a medication called an anticoagulant. The purpose of using heparin while on ECMO is to prevent clotting in the ECMO tubing. Clotting occurs when the blood turns into a jelly-like substance. During ECMO, we want the blood to stay thin and flow easily through the ECMO circuit. The heparin infusion is placed directly into the ECMO circuit.
    
15. What are the side effects of Heparin therapy?
    The most common side effect of heparin is bleeding. It will take much longer for your child's blood to clot while on Heparin. Your child will be monitored closely by the ECMO Team for bleeding. A daily head ultrasound will be done to make sure there is no bleeding in the infant's head
    
16. How do you monitor how fast the blood clots?
    The ECMO Specialist will perform a test called an ACT (Activated Clotting Time) every 30 minutes or more frequently, as needed, while on ECMO. This test measures the amount of time in seconds it takes the blood to clot. The physician will write daily parameters for this test. The heparin infusion will be adjusted accordingly to these results.
    
17. What are ECMO specialists and what do they do?
    For the duration of ECMO therapy, your child will be assigned a registered nurse and an ECMO specialist. ECMO specialists are nurses or respiratory therapists who have undergone extensive training in managing ECMO patients and equipment. He /she will also perform ACT's, manage the ECMO pump, and keep the physicians informed about your child's progress for the duration of the ECMO treatment.
    
18. What happens after my child is off ECMO?
    Your child will remain in the ICU (PICU or NICU) for continuous close monitoring of his/her progress. As your child gets better, some of the equipment and medications will be removed. If you have newborn baby, he/she may be transferred to the Neonatal Intensive Care Unit (NICU) which is a special intensive care unit for babies; if applicable, your baby will be discharged home from the NICU. Once considered stable, patients other than newborns are moved and followed on the medical floor and discharged home from there.
    
19. Will my child have a big scar on his neck?
    In most cases, the scar heals well and is very small. Once the surgeon removes the cannulas, the wound is carefully closed and a dressing is placed on it. In time, the scar will fade and is actually not noticeable
    
20. Will my child need any kind of follow-up after going home?
    Yes, your child will need to return for an ECMO follow-up visit each year. A physical exam will be performed and specific details of physical, cognitive and developmental levels will be assessed. The follow up visits and exams are set up through the Miami Children's Hospital Preventive Medicine Department and will be part of your discharge planning.
    
21. What is the ECMO reunion?
    Each year, ECMO patients and their families gather for a reunion. It is a fun event that reunites former patients and their families with the physicians and staff. The opportunity to share this special time with each family is a gratifying experience for the ECMO Team.
    

ECMO Terms

• ACT (Activated Clotting Time)
  A test performed to determine the number of seconds it takes for a sample of blood to clot
  
• Cannulation
  The procedure in which the ECMO cannulae are inserted into the baby's vein and artery by the cardiovascular surgeon
  
• Decannulation:
  The surgical removal of the ECMO cannulae.
  
• ECMO Circuit:
  The tubing pack that is connected to the baby during ECMO.
  
• ECMO Specialist
  A registered nurse or respiratory therapist who has received specialized training and certification to operate ECMO equipment
  
• Heat Exchanger
  The part of the ECMO circuit that warms the blood, before it returns to the patient's body.
  
• Heparin
  A medication called an anticoagulant that is used to thin the blood and prevent it from clotting.
  
• Idle:
  The minimum blood flow that can run the ECMO circuit as a patient prepares to come off ECMO. When on idle, your child's heart and lungs are doing most of the work on their own.
  
• Membrane Oxygenator
  The part of the ECMO circuit that functions like an artificial lung. It supplies oxygen and removes carbon dioxide
  
• Roller Pump:
  The part of the ECMO pump that functions like the heart. It pumps blood through the ECMO circuit and back to the patient.
  
• Trial Off period:
  The period when your baby/child is taken off ECMO support for short periods of time to test how well the heart and lungs are functioning on their own. If the baby/child does well during this time, he/she can be permanently removed from ECMO
  
• Ventilator:
  Also called a respirator. This machine delivers oxygen-filled breaths and inflates the lungs of the patient.
  
• Weaning
  The gradual process of decreasing blood flow through the ECMO tubing