Veterans/Experienced Parents

As an organization created, built, and managed by families of children born with congenital CMV, we are so proud of our parents who continue to support their children and this community. While your knowledge of CMV is great, we can still help by giving you a voice and a chance to lend support, as well as empowering you to continue in your journey as new challenges arise. It is because of your dedication, expertise, and first-hand knowledge, that parents are the key to success as we work to raise awareness of CMV, provide outreach to our community, and promote advocacy of issues surrounding congenital CMV.

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

No. Children 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 is the life expectancy for children born with congenital CMV?

Many children born with congenital CMV infection graduate high school, some even college, they have jobs, contribute to their family and society, and can enjoy meaningful relationships as they live to adulthood. Even children born with congenital CMV with severe disabilities and special needs can live to adulthood.

Can my future children be born with congenital CMV?

Women who have experienced a CMV infection during pregnancy, a fetal loss due to CMV, or a newborn with congenital CMV should discuss these factors with their doctor, who may recommend CMV IgM and IgG antibody labs to be drawn. Most experts recommend that women wait until their CMV IgM antibody levels decline to an undetectable level and their CMV IgG avidity index climbs to a high favorable percentage. This would indicate that the primary infection has resolved itself and that there is minimal risk of CMV transmission to the new baby. It may take 6 to 12 months for these CMV antibody and avidity tests to be favorable and for you to be ready to conceive again, but be patient. The peace of mind is worth the time and trouble and you will be better ensuring a healthy start for you and your new baby.

How can I ask for advice about things we are going through right now?

On the Facebook Fan Page, parents like you ask questions, engage in discussions, and meet other parents in their area and online. For many parents that don't want to post a question or topic, they have the ability to read through past topics and reach out to other parents in a similar situation. Click here to visit the Stop CMV Fanpage Fan Page and get talking today!

Should I share my CMV story on the website?

Yes! In the past, when visitors to the Stop CMV website landed on the Parent Stories page, they found this paragraph prefacing a small handful of stories submitted by parents:

"Perhaps no one is able to give greater insight into living with congenital CMV than the parents of those children and adults born with this disease..."

Our stories don't only define us and our children--they define our movement and our cause.

We say we want politicians to pay attention to us and care more about congenital CMV. We need them to hear about our children and our struggles as their constituents.

We say we want celebrities to champion our cause, to discuss CMV on telelvision programs, to make CMV a more prominent public concern. We need to convince them that ours is a cause compelling enough and crucial enough for their time, energy, and image.

We need to be the visual, vocal, visceral standard bearers of congenital CMV.

According to the CDC, each year 1 in 150 children is born with CMV and 1 in 750 will experience disability because of CMV. Thousands of children are born each year with congenital CMV. These high statistics reinforce CMV as a public health concern, but we need to show the world our thousands of children.

EVERY story is important.

• If your child didn't get to come home from the hospital in your arms, your story is important.
• If your child has very few (if any) lasting effects from congenital CMV, your story is important.
• If you live in a country outside of the United States, your story is important.
• If your child is still young and you don't know what to expect in the future, your story is important.
• If your child has left this life for the next too soon, your story is important.

Please add your voice to the chorus and let us share your story with the world.

It is hard to revisit many times and relive those moments that define our past. Please spend a few moments in careful thought, reflection, and composition to help us define our future.

Please send your story and 1-3 photos of your family and your child to stories@stopcmv.org.

I really don't have a lot of free time. Is there something small I can do to help?

Yes! Hands to Stop CMV is an ongoing public awareness program seeking to collect as many photographs as possible of people with “Stop CMV” written on their hand. Photos can be taken in any location, within any context, and in any style but should include “Stop CMV” written on the palm of a hand somewhere in the image. As simple as it sounds, by writing “Stop CMV” on the palm of your hand, you’ll become part of a global community dedicated to raising awareness of congenital CMV and impacting millions of lives worldwide.

Can't "handraise?" Fist Pump to Stop CMV! Many children born with congenital CMV live with cerebral palsy and other motor impairments which impede their ability to fully open their hand to take a Stop CMV hand photo. We invite all of our children, regardless of ability, to submit a hand photo or fist photo to Stop CMV. Get shooting and submit your photos here.