On-going management of congenital CMV will depend on how your child has been affected by the virus.  Even for children with no obvious signs at birth, if congenital CMV has been diagnosed they will need to be monitored in their early childhood to check for any symptoms which may develop over time, such as hearing loss.

Long-term follow up

All children born with congenital CMV should have their growth and development regularly monitored. You should be offered:

  • A hearing assessment every three to six months until the age of three and then yearly until six years old (NDCS Guidelines).  This is particularly important as hearing loss is often progressive and may get worse over time. If your child is affected by hearing loss, they may be offered hearing aids, or in some cases cochlear implants.  You should discuss these options with the Audiologist (hearing specialist).
  • A clinical assessment by a paediatrician at around one year old to check that their development is as expected.  Ongoing follow-up with a paediatrician will be required for some children.
  • Children with more severe symptoms should be regularly monitored by a paediatrician while they are being treated, then seen at least annually until the age of two.  They should also have a neurodevelopmental assessment at one year.  This will help to diagnose any problems with the development of the brain and nervous system.
  • Some children will be recommended to have an annual eye test up to the age of five.  This will be guided by an ophthalmologist.
Two boys smiling and playing

I haven’t been offered this follow-up, what should I do?

There are no statutory guidelines for treating and managing congenital CMV in the UK, therefore there may be some differences between individual doctors or hospitals.

If you are concerned about on-going treatment of your child, you should speak to the doctor looking after your child in the first instance and ask them to make referrals to the relevant specialists. If you have further concerns, you are entitled to ask to see another doctor for a second opinion. The care of children with congenital CMV is usually overseen by a paediatric infectious diseases specialist.

On-going support

There are many professionals who may be involved in the care of your child. Please contact CMV Action if you need further advice.


Doctor specially trained for babies and children

Infectious Disease Specialist

Doctor who specialises in the diagnosis and treatment of infectious diseases like CMV.  These are in the larger hospitals so you may be referred.


Doctor who specialises in disorders of the brain, spinal cord, nerves and muscles. Will advise on epilepsy.


Specialist in identifying, diagnosing, treating and monitoring hearing loss. They will advise on hearing aids and can refer you to the Cochlear Implant team.

Portage/Early years teachers

The team will offer support and advice to disabled children and their families at home. Portage is not available in all Local Authorities.

Speech and Language Therapist (SALT)

Speech and Language Therapists provide support for children who have difficulties with communication or with eating and drinking. They will also help with sensory issues and language disorders.


Physiotherapists help with motor difficulties through movement and exercise. They liaise closely with Occupational Therapists.

Occupational Therapist (OT)

Occupational Therapists advise parents and children on equipment that will help with their daily lives. They may also help with sensory issues. They liaise closely with physiotherapists and will help devise suitable programmes.


Psychologists study behaviour, thoughts and feelings and advise on how to manage any difficulties. They will advise on behaviour difficulties.


The dietician will assess nutritional needs based upon your child’s medical condition and help with feeding issues.

Teacher of the Deaf/Teacher of the Visually Impaired

Teachers with extra specialism in hearing and vision difficulties.