What is the parents' role in ECMO?

Parents and family members are encouraged to visit their child while he is on ECMO. Visiting hours are unrestricted for parents. Others may visit if they come with one of the parents. No more than two people may visit at the same time. Siblings may be allowed to visit after checking with your child's nurse. For more information about individual unit policies, please review the admission booklet for the unit and check with the bedside nurse. Here are some suggestions to assist you in making the most of your visits with your child.

Some children may receive medicine to help them sleep and others may just feel too sick to talk while on ECMO, however, many children will be alert and responsive during awake periods. In either case, it is important for you, as parents and family members, to let your child know you are there. You, as parents, can give your child what we can't, because he is your child and responds to you.

Check with your child's nurse to see if it is all right to talk or touch your child. Some children do not respond well to stimulation when they are very sick.

The simplest forms of interaction are probably the most important for you and your child. Talking to your child can be very satisfying. All children, whether newborn or older, know the voices of their loved ones. You may wish to read a story or sing a lullaby. Touching your child and holding his hand will provide much needed comfort. If your child is too sleepy or unable to open his eyes, it is still important for you to interact with your child. Your child may move at the sound of your voice or from your gentle touch and let you know that he recognizes you.

Although your child cannot be held while on ECMO, you can help with other parts of his care. You may cleanse your child's lips with a moist swab or apply cream to the skin. We encourage you to bring pictures of family members for the bedside as well as small stuffed animals and music boxes. Newborns are most attracted to objects that are black and white and those with faces on them. Reading stories or just holding hands can be very rewarding.

For moms who are breastfeeding, we encourage you to pump your breasts and save the milk by freezing it. It can be safely stored for use later, after the child is off ECMO. Please ask your nurse for more information about pumping and saving milk. Your social worker may be able to help you locate an electric breast pump for rental and arrange a referral to a lactation counselor.

Most family members feel more comfortable when they are able to “do something” for the child. We encourage you to do whatever you feel comfortable with, at the same time keeping in mind that your child also needs quiet time to rest and heal. If you are unsure of what to do for your child, please ask the nurse or specialists. Part of our job is to help you.