My child has been diagnosed with congenital CMV, what can I expect for their future?

As with any child, it is difficult to predict what the future holds for a child with cCMV. At CMV Action we understand just how difficult a diagnosis of cCMV can be for your family. The early days following diagnosis can be bewildering and upsetting. As your child gets older they may exceed expectations or face new challenges as a result of the virus.

Our dedicated team of support volunteers have all had experiences of cCMV. They are on hand to talk to you about your experiences, point you in the direction of further information or put you in contact with parents facing similar issues.

Whilst other parents can offer a wealth of advice and support, we recommend that you discuss any concerns about your child’s health with their doctor.

Will all children born with congenital CMV have problems?

There is a huge range in the severity of problems that children with congenital CMV experience and many children will have absolutely no problems at all.

Most children born with congenital CMV will not show symptoms at birth. This is called ‘asymptomatic’ infection. Most of these children will not have any problems but around 15% of them will go on to develop hearing loss over time. Very rarely they may go on to have developmental or learning difficulties.

Some children will be born with obvious symptoms of congenital CMV such as a small head size (microcephaly), little red spots (petechiae), jaundice, enlarged liver and spleen, hearing loss or calcium deposits in the brain. Some of these children will go on to develop other problems such as cerebral palsy, seizures, ADHD, autism, developmental differences and learning delays or visual impairment.

Overall around one in every five children born with the virus will have permanent problems such as hearing loss or developmental disabilities due to the infection.

Will my child’s hearing loss get worse?

The most common disability associated with congenital CMV infection is sensorineural (or inner ear) hearing loss. It is progressive (worsens over time) for around half of children infected. Therefore, you need to have regular follow-ups with an Audiologist to monitor any changes.

If your child is diagnosed with congenital CMV before they are four weeks old then they can be treated with antiviral medication. This may help to stop hearing loss from getting worse.

What problems might emerge over time?

There isn’t a lot of evidence on this as most studies only track babies’ progress for a couple of years after diagnosis. One study followed children for five years and found that all moderate and serious problems were apparent in the first year of life. Milder problems (e.g. hearing loss in one ear, mild language delay, mild motor impairment that had limited implications for the child) were identified later on.

Families affected by CMV in the UK have a range  of different experiences. Some have identified issues, for example around feeding, behaviour and sensory development that became more obvious as their child got older.

CMV Action can put you in touch with other families so you can hear about their individual experiences.

Call our freephone helpline on 0808 802 0030.

My child has congenital CMV, are other people at risk of CMV infection from them?

If your child was born with congenital CMV he/she may still have the virus present in his/her saliva and urine for prolonged periods of time.  It is then possible for others to catch CMV by contact with your child’s saliva or urine.  However, simple measures, such as not sharing food or drink and handwashing after contact with saliva or urine, significantly reduces this risk.

Many young children who are otherwise healthy will also shed the virus in their saliva and urine for prolonged periods of time.  Therefore, children with CMV should not be treated in a different way to other children.

If I have a baby with congenital CMV, could my next baby also have congenital CMV?

Whilst it is theoretically possible for a pregnant woman to be infected with a different strain of CMV and to pass this onto another baby, this would be an extremely rare event.  The risk of having a second baby with CMV symptoms as a result of your original virus reactivating is also very low – around 0.01% or 1 in 10,000.  Experts in the UK, have not seen two children with congenital CMV in the same family.  However, it is advised that all pregnant women practice simple hygiene precautions even if they have had CMV before.

Should my child’s nursery or school take special precautions?

Around a quarter of young children will already be carrying the virus.  There is therefore no need for education settings to treat your child any differently from other children.  Any of the children they work with could have an active CMV infection, therefore good hygiene measures are recommended in relation to every child.

All nurseries and schools should ensure that staff are practicing good hygiene precautions with all children.  This means washing hands after changing nappies, not sharing cups and cutlery with children and washing toys regularly.  These simple hygiene measures have been shown to reduce the risk of catching CMV.

If you have any problems with school or nursery because your child has congenital CMV, our support volunteers at CMV Action will be happy to help and advocate on your behalf.

Should I find out if my child is still shedding the virus?

Most children with congenital CMV will shed the virus (which means it will be present in their bodily fluids) through toddler and preschool age. Infants and children who catch CMV after they are born will also shed CMV. The virus will affect each child differently and the length of viral shedding can range from just a few months to eight years of age to much longer.

It is not necessary to keep checking if your child still has the virus active in their urine or saliva because its presence does not appear to influence or predict problems. Furthermore, schools and nurseries should not require your child to be tested for CMV shedding before admitting them. Your child should not be denied access to nursery or education because of the diagnosis of congenital CMV infection.