Press release
The virus pregnant women need to know about and A CALL for screening OF ALL NEWBORNS
- CMV is the most common viral infection passed from mother to unborn baby and the most common virus to damage a growing foetus.
- CMV damages 2 to 3 babies every day in the UK. That’s around 1,000 babies every year
- Congenital CMV is more common than Down’s Syndrome and causes more birth defects and childhood deaths than Toxoplasmosis (from cat faeces) or Listeriosis (from soft cheese).
- For International CMV Awareness Month 2021, the charity CMV Action is calling on the government to put screening in place at birth to improve outcomes.
When Alfie Harrison was born in Watford hospital in 2018 he arrived in double quick time. His parents and three older sisters were very excited about having a little boy in the family. However within hours their joy was replaced by worry and concern.
What was to unfold was completely unexpected.
Alfie is now two years old. He has cerebral palsy in all his limbs, he suffers from seizures and dystonia, he is visually impaired and has difficulty swallowing.
His parents, Helen and Dan Harrison from St Albans, Hertfordshire, were totally unaware of the very serious health condition their baby boy had contracted as a result of an ‘innocuous’ virus contracted before birth.
Alfie’s condition was caused by a common virus from the herpes family called Cytomegalovirus (CMV). When a baby is born with the CMV infection, it is called congenital CMV (cCMV).
cCMV is more common than Down’s Syndrome and causes more birth defects and childhood deaths than Toxoplasmosis (from cat poo) or Listeriosis (from soft cheese). One in 150 babies born in the UK suffer the negative impact cCMV. That’s almost 1,000 babies every year in the UK.
With three children already, the Harrisons were ‘seasoned parents’ and well practiced in the ‘dos ‘and ‘don’ts’ of maintaining a healthy pregnancy. Helen said: “Even though this was my fourth pregnancy I had never ever heard of cCMV before. My sister-in-law is also a midwife and, before Alfie was born, she and her team had never heard of it either.
“When Alfie was born he had a purple pinprick rash. It was initially thought that he might have sepsis. Confused by Alfie’s symptoms of rash, along with enlarged liver and spleen and microcephaly (small head) the hospital contacted St Mary’s hospital, London. St Mary’s urged for Alfie to be tested for CMV and it was confirmed within a week. Alfie was able to receive the antiviral medication which, although can’t undo the damage done during pregnancy, can suppress the virus and stop it doing any more damage.”
Studies have shown that treatment with antiviral therapy within the first month of life leads to improved outcomes in the long term. CMV Action, the only UK charity offering advice and support to families affected by cCMV, is calling on the government to introduce simple screening for cCMV on all newborns to allow for timely treatment to be administered. It has launched a petition and needs 10,000 signatures. https://petition.parliament.uk/petitions/587186
Helen said: “Although it is a leading cause of lifelong disabilities, very few pregnant women are aware of it or the risk it poses. This is a tragedy. Some simple hygiene precautions during pregnancy can help mitigate the risk of transmitting this virus to your baby. I really want other mums-to-be to know about this. Please sign the petition to have routine screening at birth for cCMV.”
What is CMV
CMV is a common virus (from the herpes family) and can infect people of all ages. Most of us don’t even know that we have it. However, if a pregnant woman catches CMV and passes it to her unborn baby it can pose serious risks to her child. CMV is one of the leading causes of hearing loss in children and childhood disability.
The majority of babies born with congenital CMV will not have any symptoms at birth and will not suffer any long-term problems. However, everyday in the UK two to three babies are negatively affected by the CMV virus – that is almost 1,000 babies every year.
Petition
For International CMV Awareness month 2021, CMV Action, the only UK charity offering advice and support to families affected by congenital CMV, is petitioning the government to review and fund newborn screening tests for cCMV.
Please help by signing the petition here: https://petition.parliament.uk/petitions/587186
Associate Professor and Honorary Consultant in Paediatric Infectious Diseases, Dr Chrissie Jones, said that there three main reasons why screening for cCMV of all newborn babies is worthwhile:
- The majority of babies born with cCMV have no symptoms but they can develop them later. Half of hearing loss, due to the CMV virus, can be progressive or late onset. Screening all babies would allow them to be monitored and treated for symptoms caused by the virus, including hearing loss in a timely manner.
- Diagnosis within the first 21 days is critical to establish that the CMV infection is congenital rather than postnatally acquired. After this time the blood spot test needs to be relied on and this can delay diagnosis.
- Anti-viral treatment has to be started within the first 28 days of baby’s life in order to be effective. Therefore, delayed diagnosis, waiting for hearing tests or other diagnostic tests, means this window of opportunity can be lost.
How to reduce your risk of transmission?
Without a vaccine against CMV, reducing the risks of transmission is important – particularly while pregnant. The mainstay of prevention is to reduce contact with saliva and urine of young children who may have CMV.
- Wash hands regularly with soap and water, especially after changing nappies or coming into contact with bodily fluids.
- Wash toys regularly, especially after they have come into contact with urine or saliva.
- Avoid sharing cutlery, drinks or food with children. Do not put dummies into your mouth.
- Avoid kissing babies, toddlers and small children directly on the mouth. Kiss them on the head instead or give them a big hug.
Helen and Dan Harrison are undertaking a 109 km bike ride to raise money for CMV Action. https://uk.virginmoneygiving.com/cyclingforCMVteamAlfie
For more information and support on CMV visit: www.CMVaction.org.uk
