Pregnant and Newly Diagnosed with CMV

If you and/or your baby have just recently been diagnosed with CMV, it can be an extremely confusing, difficult time--we've been there. Just trying to understand what the doctors are telling you can leave you feeling lost and alone sometimes. Stop CMV is here to help guide you as you begin this journey, providing information and resources to better understand what comes next. More than that, Stop CMV is about providing connections to other parents who understand what you're going through and can give advice, support, and unconditional love for you and your beautiful child.

If you are a pregnant woman who has been diagnosed with CMV, Stop CMV can connect you with doctors who can provide more information about treatments that may help. For more information, contact treatment@stopcmv.org.

Medical Issues

Are there any treatments that can help my baby?

Yes. Recent studies suggest that CMV hyperimmune globulin (IVIG) treatment may reduce the risk of congenital infection and disease when given to pregnant women experiencing a primary CMV infection. Keep in mind that once the baby has been infected in utero, IVIG treatment is not necessarily effective. However, if a mother has a primary infection and is treated, IVIG treatment can prevent transmission to the baby.

Ganciclovir and Valganciclovir are antiviral treatments that may be beneficial to a newborn with symptomatic congenital CMV. Ganciclovir and Valganciclovir may prevent hearing loss and improve head and brain growth. They can also help combat immediate medical concerns caused by CMV, such as thrombocytopenia (low platelets), organ failure (most commonly spleen and/or liver), hepatitis, and pneumonitis.

If you are a pregnant woman who has been diagnosed with CMV or have a newborn who has been diagnosed with congenital CMV, Stop CMV can connect you with doctors who can provide more information about treatments that may help. For more information, contact treatment@stopcmv.org.

Are all children with congenital CMV affected in the same way?

No. Babies born with congenital CMV infection have widely diverse outcomes, and it is difficult to predict with certainty the future of your child. However, we have provided guidelines to help you understand the present and prepare for the future with your child. They are not all inclusive, because all children are unique individuals, but hopefully you will find them helpful. Click here for more information about long-term outcomes for children born with congenital CMV.

What labs or tests should my baby have in the hospital or after discharge?

At birth, your child should have baseline laboratory tests completed to determine what organs in the body have been affected by CMV, including the following:

• complete blood count
• platelet count
• liver function test
• computerized tomography (CT) brain scan
• eye exam by an ophthalmologist
• hearing test

If any procedures or laboratory results are abnormal, follow up testing should be conducted.

Your child should be supported by a pediatrician or family doctor who understands developmental issues, and who will serve as your child’s primary care provider. As with any newborn, regularly scheduled follow-up visits with the child's pediatrician or family doctor are advised.

According to the CDC, newborns diagnosed with congenital CMV should have their hearing and vision tested annually, regardless of the outcome of any initial tests at birth. If a child has delayed hearing or vision problems, early detection can help their development.

Because a child with congenital CMV may have special needs, their growth and development should be followed carefully.

Routine immunizations (shots) are recommended for all children born with congenital CMV.

Emotional and Social Issues

How do I cope with all of this?

Being told your child has anything wrong is the hardest thing any parent has to endure. Whether you are pregnant or your child has received a CMV diagnosis at birth will result in various feelings. Your first steps at either point are:

• Stop and gather your feelings and strength. Feelings are never right or wrong. They are yours.
• Guilt is a common one. As much as you might feel responsible, you did not do this to your child. CMV did.
• Your feelings may represent the grieving process (Depression, anger, bargaining, acceptance).
• Research. One of the most difficult things in dealing with CMV is that not all medical personnel have the most up to date information on treatment and outcomes. This will also help you gain a feeling of control. Stop CMV is a great starting point in gathering information, resources, being connected and getting connected. You are and always will be your child's greatest advocate.
• Cry. It is ok in-between being that advocate.
• Ask your questions. Always write down your questions when you think of them so that when you meet with the doctors in their office or in the hospital you have them handy. Feel free to take notes or have someone with you who will.
• Gather a team of doctors that you trust and feel comfortable with. Ask your pediatrician for referrals and ask around. Check with Stop CMV to see if there are other families in your area who can make a referral.
• Support system. Just as important as a good team of doctors will be, so will be your support system. People you can call who will just listen, or take care of other children if need be. People you can vent to. Whether this is family or friends these people are going to be vital in your survival. Stop CMV and CMV listservs are great ways to talk to people who "get it". If need be, look into professional counseling. Having someone who is objective and not emotionally involved can make a difference. Find a support group for special needs parents in your area.
• Take care of yourself, emotionally and physically. Neglecting your own needs will not help your child.
• Ask for help. You are not expected to be able to do it all and you will not be able to.
• Communicate with your spouse or partner. Take care of your relationship.
• Take one day at a time. Some days just getting through the moment will be enough.
• Last, but most important, enjoy your child. It is inevitable to engross yourself in every milestone and worry about every achievement. There will still be those precious moments and successes, unique to your child, but not of any less of value.

Can I talk to other mothers who have been through this?

Being told that your child has congenital CMV is difficult and stressful. Please know that you are not alone and that there is a community of parents around the world ready to support you on your new journey. They understand what you are going through and are full of support and knowledge. If you have questions on a particular issue your child is dealing with, Stop CMV can help you connect with another parent who has dealt with similar issues. Be sure to visit the Stop CMV Fanpage on Facebook. You can ask questions, participate in the daily discussions, and "meet" other families dealing with similar issues.