At CMV Action we understand just how difficult a diagnosis of CMV can be for your family. The early days following diagnosis can be bewildering and upsetting. As your child gets older they may face new challenges as a result of the virus.
This is why we provide our members with a very personal support service:
- A named individual at the end of the phone or email.
- They can put you in touch with other families in similar circumstances.
- Our team of volunteer support advisers all have experience of congenital CMV. They are here to talk to you about your experiences, point you in the direction of further information or put you in contact with other parents facing similar issues.
Contact a support advisor by:
Your support team
When you contact CMV Action we will pass your details to a volunteer who has the appropriate experience and knowledge to support you. If you then decide to become a member you can be put in touch with families living near you or/and families with similar experiences, if you wish to. We can also contact medical advisors if your query relates to a medical issue.
Some children born with CMV will not have any health problems, others will have more serious problems. Our team of volunteers has been chosen to cover a range of different issues that families may face.
Sarah Beadell, Middlesex. Key experiences: hearing loss
Sarah's son is 7 and has unilateral hearing loss as a result of CMV infection. He underwent 6 weeks of intravenous gancyclovir treatment from 4 weeks of age. He currently has no other symptoms. He had febrile convulsions when he was 18 months old but these have stopped and they do not know if they were linked to CMV. Sarah's son walked at 11 months and speaks very well. His doctors say that far from developmental delay, he is ahead of his developmental milestones. He attends a mainstream primary school and is doing well.
Cathy Kelham, Devon. Key experiences: supporting family members with CMV diagnosis
Cathy's grandaughter was born profoundly deaf as a result of CMV but has no other symptoms and is developing normally. However, she remembers only too well what a worry it was for her daughter when she first had the diagnosis of CMV. She would love to hear from grandparents and other family members.
Sarah Dewar, Hampshire. Key experiences: Hearing loss, cochlear implant, language disorder
Sarah's son was born with some symptoms of CMV but he was not diagnosed until he was nearly 3 years old. Initially, his problems appeared to be physical and he had calcification of the brain. He is profoundly deaf and this was also diagnosed late. He is now aged 17 and has a cochlear implant. After much determination he has overcome most of the motor issues and balance issues. Due to his deafness and a language disorder he is academically behind his peers and is at a special school for the deaf. Her son is very happy, outgoing and has a great sense of humour.
Jan Pearman, East Sussex. Key experiences: Teacher of the Deaf. Severe cerebral palsy, blind, epilepsy.
Jan's granddaughter was born with CMV. She is severely affected but is a strong little lady with the most amazing smile. As a Teacher of the Deaf, Jan was barely aware of CMV, let alone the possible consequences.
Sharon Robinson, Buckinghamshire. Key experiences: Midwife, lost baby in pregnancy to CMV
Sharon had heard of CMV but never come across it until, very sadly at 28 weeks into her first pregnancy, she was diagnosed with the virus. After lots of invasive testing and a very worrying time, her baby boy was stillborn at 34 weeks. Sharon supports women in similar situations and advises on midwifery care.
Please be aware that this service is provided by volunteers. Although we will try and respond to your enquiry as soon as possible, we may not always be able to do so straight away. We will aim to get back to you within three days.
Our volunteers are not health professionals but we do have medical professionals that we can refer to if necessary. However, they will happily support you through decisions you need to make and talk about your experiences and concerns as well as their own experiences.