Extended Family and Friends

There is a very old saying that goes, "It takes a village to raise a child." When that child has special needs, this is especially true. Family and friends are a critical part of life when you have a child with CMV, but sometimes it's hard to know what to do. Stop CMV can help you learn more - about CMV, about the special needs each child might face, and about what your family member or friend might need most right now.

What is CMV and how did my loved one catch it?

CMV is a virus that can be transmitted to an unborn child from a pregnant mother experiencing a primary or recurrent CMV infection. CMV can cause serious disease in babies who were infected with CMV before birth (referred to as congenital CMV). Children born with congenital CMV may develop permanent medical conditions and disabilities, such as deafness, blindness, cerebral palsy, mental and physical disabilities, seizures, and death.

A person who has not been exposed to CMV can become infected when they come into contact with infected body fluids, including urine, saliva, blood, mucus, and tears. CMV is very common among healthy children 1 to 3 years of age who are at high risk for contracting CMV from their peers. Contact with the saliva or urine of young children is a major cause of CMV infection among pregnant women.

Can I catch CMV from my loved one or their child?

Yes, but most people are exposed to CMV at some point in their lifetime and may not realize they have already been exposed. It is estimated that 50-80% of adults in the United States have been infected with CMV by the time they reach 40 years old. Most infections with CMV are "silent" or asymptomatic, meaning most people who are infected with CMV have no signs or symptoms. Keep in mind that healthy people who acquire CMV in childhood or adulthood will not experience an adverse outcome as a result of CMV infection.

How can I support my loved one and their child?

Do you have a friends or family member with a child who has congenital CMV? Whenever someone we know or love is going through a difficult time or coping with a major life event our natural reaction is to want to do something. Sickness and disability can make us feel helpless, especially when it is a child. Our natural instinct is to want to help. Sometimes when we try to help, we can be doing just the opposite. These are just some guidelines when dealing with a family member or friend who has a child with CMV.

Do

• Treat the new parents as you would any other new parents. Coo and gaga over their new baby.
• Show your friends that you care by showing an interest in their child. Engage the child.
• Keep the lines of communication open. Call and check in. Let them know they are not alone.
• Be creative in ways you can help. Meals, taking care of children, pets, organize a parents, mom or dads night out.
• Include them in family and neighborhood events. Don’t let them isolate themselves. Don’t be insulted if you don’t get a call back. Parents of special needs children are often overwhelmed. If they say no, keep asking.
• Include child in play dates. This will be very important to them.
• It’s ok to laugh. A sense of humor and good laugh can ease a stressful day.
• Ask about CMV, try to learn about it and ask what you can do. Don’t email all the websites you find for all the disabilities. They have internet and have poured over them.
• Support the parent’s decisions. They were not easy to make and they probably agonized over them. In the end they made them based on what was best for their child and their family.
• Support CMV events and help promote awareness.

Don’t

• Avoid the new parents or their baby. They already feel isolated enough.
• Offer medical advice. They are getting enough from all the doctors.
• Judge their decisions. They made them based on all the information they have. They did not cause this and did not do this. More often than not they probably have never heard about CMV until now, just like you. Make religious comments. No matter what their religious convictions are, it does not help to hear “this was meant to be”.
• PLEASE PLEASE don’t be afraid of CMV. You cannot catch it from breathing the same air. If you are pregnant or planning on becoming pregnant and are scared or worried, tell them! Ask for information to give your doctor to protect yourself and so that you can fully understand how CMV is transmitted. Nothing hurts more than someone who is afraid to be around your child without all the information.