Family education: Your infant with breathing problems on ECMO
What is ECMO?
ECMO stands for Extracorporeal Membrane Oxygenation which means oxygenation outside the body. It is used for babies whose lungs are failing despite other treatments. ECMO takes over the work of the lungs so they can rest and heal. ECMO is similar to heart-lung bypass used in the operating room.
If your baby has problems breathing, a ventilator or breathing machine may be necessary. The ventilator forces air into the baby's lungs providing oxygen and removing carbon dioxide. Some babies lungs are so sick that the ventilator cannot adequately provide enough oxygen or remove enough carbon dioxide. ECMO can do this for your baby while allowing their lungs to rest and improve.
Babies who need ECMO may have one of the following conditions:
- Congenital Diaphragmatic Hernia (CDH)
- Meconium Aspiration Syndrome (MAS)
- Pulmonary Hypertension (PPHN/PAH)
- Inborn Errors of Metabolism
In about 20 percent of cases, babies do not improve even with the use of ECMO. Sometimes a complex problem is not diagnosed until after ECMO has begun. If it is determined that a baby would not improve or recover with the use of ECMO, the family would be notified and options discussed with family input. Those treatments also may not be successful.
Before ECMO is begun, your baby will have an ultrasound of the heart and brain. Heart tests are checked to make sure that the cause of your baby's breathing problem is not related to the heart. The ultrasound of the brain is done to help the doctors know if there is bleeding in the head that could worsen with the use of ECMO.
How is ECMO done?
The pediatric surgeon will place cannula, or tubes into large vessels in the baby's neck. These tubes connected to the ECMO circuit. The baby's blood slowly drains into the circuit and is circulated through an artificial lung, where oxygen and carbon dioxide are exchanged. The blood circulates through a warmer before returning to the baby.
VA verses VV ECMO
There are two types of ECMO: VA and VV. In VA or veno-arterial ECMO, blood drains from a vein and returns through an artery. It can support heart and lung function. In VV or veno-venous ECMO, blood drains from and returns to a vein. This type is used primarily to rest the lungs.
What happens during ECMO?
As soon as the correct ECMO flow is reached, the ventilator may be adjusted to let the lungs rest. The ventilator settings may remain low until your baby is ready to come off ECMO. The healing process for the lungs may take several days or weeks. As your baby improves, the ECMO oxygenator will be used less by decreasing the amount of gas delivered across the membrane to allow the lungs do more of the work. The length of time on ECMO varies for each patient.
While on ECMO your baby will be monitored continuously. He or she will still be very sick and require intensive care. Lab work is checked frequently and will help us know when the baby is ready to have the ECMO flow decreased. X-rays of your baby's lungs are done daily to determine if the lungs are improving.
Your baby will be given medication to prevent pain before and during the procedure. Medicine to keep your baby calm is given while ECMO is in use. If necessary, extra medicine can also be given to calm your baby and aid with sleep. Relaxing music may also be helpful.
Heparin, a drug that prevents blood clotting, is given to each baby on ECMO. The amount of heparin varies with each patient and is closely monitored. Frequent adjustments are made in the amount needed.
An ultrasound of your baby's head is done to check for abnormal bleeding. Ultrasounds can also be done, if necessary, of the kidneys and heart.
Transfusions are needed to keep your baby's blood count at a normal level. Platelets, a blood product that helps with clotting, are given regularly to all patients on ECMO.
All medications can be given and lab work drawn without sticking your baby. There are several connections on the ECMO circuit where medications are given and blood drawn.
How will my baby look while on ECMO?
Before ECMO is begun your child may look slightly blue due to lack of oxygen. As soon as ECMO begins to provide oxygen to your baby, skin color usually becomes pinker.
Your baby will need to be sedated to prevent dislodging the cannula. Arm and leg movement may be possible but will not be enough to pull out any tubes. Other tubes that may be in place are the same as before ECMO. These include a tube for the ventilator, and a small catheter in the navel for blood draws and blood pressure monotoring. A catheter/arterial line to your baby's bladder may be needed to monitor urine output.
Most babies on ECMO become slightly swollen because of the severity of their illness. This swelling is most evident after one to two days on ECMO. It will improve as your baby gets better.
After the cannulae are placed and your baby is stable, visitors are allowed just as before the baby was on ECMO. When procedures are done you may be asked to wait for a few minutes before visiting. Your baby's nurse will inform you of specific times that visiting is limited.
What can I do for my baby?
When visiting your child, the nurse will help you understand what your baby needs. At first, your baby needs to be kept in a quiet environment. In the hours and days ahead, you will be able to enjoy more interaction with your baby. Your baby may benefit if you talk or sing. If you cannot visit as much as you would like, you can make audiotapes that can be played when you are not there.
Stroking may be better than patting. Classical music may be better than rattles or squeaky toys. Your baby may not even want to be touched. Noise can be irritating to your baby. The nurse can help you learn what will work best for your baby during this stressful time.
What are the risks of ECMO?
Because of the need for heparin, babies may have increased bleeding. This is closely monitored. Blood is replaced as needed. Bleeding can occur anywhere, and can be managed in most cases. Bleeding is also possible around the brain. If this occurs, ECMO may need to be stopped to control the bleeding.
Even with the use of heparin, small clots may develop in the ECMO tubing. These clots can be dislodged and enter the baby's circulation. This could possibly cause damage to vital organs.
Infection may occur and if suspected, antibiotics are begun. Most babies have antibiotics begun before needing ECMO, but infections can still occur.
Problems with the ECMO circuit can occur at any time. The ECMO Specialists who manages the circuit are specially trained to recognize and correct any problem with the ECMO tubing and its components. A back-up ECMO circuit is available at all times.
A team of physicians, including a pediatric surgeon, ECMO physician, and neonatologist will care for your baby. A registered nurse will be with your baby at all times. An ECMO Specialist (a nurse or a respiratory therapist) will manage the ECMO circuit. Other members of the health care team may also be involved with the care of your baby. These may include the social worker, nutritionist, chaplain, and pharmacist.
Will breast-feeding be possible?
Your child will not be able to nurse or take a bottle while on ECMO. Nutrition is provided through a special type of fluid given in the blood stream. Breast-feeding can be done after the baby comes off ECMO. Until that time, mothers who wish to breast-feed can express milk and freeze it for use later. Your baby's nurse can explain how to do this.
What happens when my baby comes off ECMO?
With each type of ECMO, the process of weaning is different. With VA ECMO, when the baby is ready, the flow is slowly decreased to a very slow rate. If your baby tolerates this low flow after a sufficient length of time, the flow can be stopped and your baby allowed to do all the work. After just a few minutes of no ECMO flow, your baby's oxygen and carbon dioxide levels will be checked. If this is satisfactory, ECMO can be discontinued.
The weaning process for VV ECMO involves decreasing the flow to a set rate. After this set rate is reached the oxygen flow to the artificial lung is stopped. When this is done the baby's lungs are supplying all the oxygen. Blood gases are checked and if satisfactory, VV ECMO can be stopped.
The procedure for coming off ECMO is similar to how a child is begun on ECMO. Once it is determined that ECMO can be discontinued, the tubing is clamped, stopping blood flow to the circuit. The pediatric surgeon will then remove the cannulae.
After ECMO is discontinued your baby will still breathe with the help of a ventilator. The ventilator settings will be decreased as the baby continues to improve.
Will my baby have any long-term problems?
Some babies have difficulty with feeding after ECMO. With help, your baby may learn to nurse or take a bottle without problems.
Long-term follow-up of patients on ECMO is ongoing. The range of problems may extend from no problems at all to severe, long-term medical problems. Their severity often depends on many factors involving your child's disease process and treatment course.
Due to the severity of problems before ECMO, there may be some babies who continue to need oxygen even after going home. If this is the case, you will be taught what is needed before taking your baby home.
For more information, please contact Daphne Hardison, RN, BSN; ECMO Manager at email@example.com.
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