Pregnant Women Kept In Dark About Killer Virus

     

Only 14% of women aged 18 – 44 know about the deadly CMV virus, that is more common than Down’s Syndrome, Toxoplasmosis, Spina Bifida or Rubella, according to a survey" title="">[1] of over 1,000 British women just published by CMV Action" title="">[2].

Congenital CMV is one of the main causes of children being born with birth defects in the UK but pregnant women are not routinely told about it, nor the simple steps they can take to protect themselves.

CMV Chair and parent of a CMV child, Caroline Star, takes up the story:

“CMV can have devastating effects on an unborn foetus including profound deafness, cerebral palsy and even stillbirth, and yet most women of childbearing age have no idea what it is. Healthcare professionals may be apprehensive about telling pregnant women about CMV for fear of worrying them because there is no vaccine as yet. However, there are some simple steps women can take to avoid catching CMV when pregnant and it doesn’t take long to arm women with this knowledge”. 

CMV Action wants to educate women about the virus and a range of preventative measures – washing your hands regularly and thoroughly with soap and water during pregnancy, especially after changing a young child’s nappy or clearing up after meals, is paramount. The CMV virus is easily killed by soap and water but remains alive outside the body for as long as 15 minutes.

Women of child bearing age in Great Britain want to know more about CMV and the survey reflects that; nine out of ten (91%) women think that pregnant women should be given advice about CMV infection during pregnancy" title="">[3]. Around seven in ten women say it would be realistic to change their behaviour and take each of the recommended measures to prevent CMV during pregnancy, such as not sharing their babies’ dummies and their cutlery and food with anyone, or using a condom when having sex." title="">[4] 

But for women of child bearing age in Great Britain, the advice needs to come from a healthcare professional. In fact, three quarters of women (75%) say that they would value the advice from a midwife about whether or not to take preventative measures to protect themselves against CMV infection during pregnancy.  A short conversation with a midwife or doctor could save a baby’s life or protect it from a lifetime of suffering.

ENDS

For further information, images, case studies or interview with a CMV Action trustee, Professor of Virology or other expert please contact Sara Stewart at Mad As A March Hare on 01886 884083 or email sara@madasamarchhare.com or tweet me on

EDITOR’S NOTES

Dr Paul Griffiths

Paul Griffiths, Professor of Virology at the Royal Free Hospital and University College London, studied medicine at St Bartholomew’s Hospital in London and has spent his professional life in medical virology. He has an international reputation, unrivalled expertise and insight into the effect that viruses can have on patients and their families. He has published a book, entitled The Stealth Virus, about CMV and its effects.

Caroline Star

Caroline Star is chair of CMV, a CMV parent and currently a Senior Civil Servant having previously led on children’s policy at the Prime Minister’s Strategy Unit.

CMV Action

CMV is a virus which up to 80% of people in the UK will catch yet no-one has ever heard of it. Once caught, you have it for life.

CMV was discovered in the 50s by the same team of doctors that discovered polio, measles, mumps and chicken pox - yet CMV still remains almost unheard of and without any safe or effective vaccination or treatment.

Symptoms can be mistaken for a cold, and healthy adults will often not even realise they’ve contracted it.

However, if a pregnant woman catches CMV, it can be passed to her unborn baby with disastrous results:

  • 1 in 1000 babies born in the UK will be affected as a result of CMV this is comparable to the number born with Down’s Syndrome
  • CMV causes more birth defects and childhood deaths than Down’s Syndrome, Spina Bifida, Toxoplasmosis, Listeria, Cystic  Fibrosis or HIV/Aids
  • CMV can be a cause of miscarriage and stillbirth
  • CMV is the major, preventable reason children are born deaf or go on to develop hearing problems in childhood
  • CMV can also cause cerebral palsy, blindness, brain calcification, learning difficulties, seizures, autism and dyspraxia as well as limiting a child’s mental and physical ability to that of a baby
  • Only a third of babies who go on to develop permanent disabilities will be obviously ill at birth. For example, newborn babies who initially appear healthy can develop a hearing loss over time.

Despite ALL THIS, very few professionals or pregnant women know about it and pregnant women are not routinely warned or educated about CMV.  This must change.

About CMV Action

CMV Action is a UK charity comprising parents and volunteers - the majority of whom have CMV children of their own - who have come together to raise public awareness of Congenital CMV, and campaign for better prevention and management measures within the NHS.

CMV Action aims to make a difference.

In June 2014, the charity is holding its first awareness month in the UK focusing on women planning a pregnancy as well as their health care providers. We want them to know about CMV and the simple steps that can be taken to prevent contracting the virus whilst pregnant.

Toddlers and babies are the most likely to spread the virus via their saliva, nasal discharge and other bodily fluids. To make matters worse, the virus can live outside the body for at least 15 minutes on some surfaces.

Pregnant women should avoid kissing young children and babies close to their mouth or nose or share cutlery, drinks or food with them. They should also wash their hands using soap and water after changing a child’s nappy, clearing up food, wiping a child’s face as well as making hand washing a regular part of their daily routine.

They should wash any items that have been contaminated by bodily fluids with soap and water.  They should use a condom after conception.

The month will include:

  • launch featuring CMV Action patron Rufus Hound
  • publication of UK research findings on CMV awareness amongst the general public
  • social media support from key opinion formers including the National Childbirth Trust and Mumsnet
  • WASH AWAY CMV viral photo awareness-raising campaign
  • soap bombing campaign to highlight hand-washing

Over the longer term, more needs to be done to support the development of a vaccine. CMV is a ‘stealth virus’ which works by evading the immune system so developing a vaccine isn’t easy. However international experts and government representatives are now positive that it can be done.

CMV Action are supporting researchers and medical professionals in the development of CMV screening for pregnant women and newborns, and in the long term, the development and implementation of a vaccine against congenital CMV.

The objectives of the organisation are:

1. To support families affected by CMV

  • Provide advice and information
  • Enable members to support each other by connecting families living in the same area or experiencing the same issues
  • Advocate on behalf of families affected by CMV
  • Empower and support parents to work effectively with professionals

2. To educate professionals, parents-to-be and the general public about  prevention of CMV

  • Run campaigns to increase awareness amongst pregnant women about the risks of CMV infection and the simple hygiene measures that can prevent it
  • Develop an engagement programme to increase awareness amongst professionals and agencies who work with pregnant women

3. To support the development and implementation of research into better testing, treatment and management of CMV

  • Support recruitment into trials
  • Support research bids
  • Disseminate research evidence in lay terms to parents, journalists and policy makers
  • Campaign for relevant bodies to implement research findings
  • Campaign for better and more consistent management of CMV

4. Raise awareness of the need for a vaccine

  • Understand public views
  • Develop a long-term strategy for the next 10 years 

 


" title="">[1] The research was conducted by ComRes interviewed 1,008 British women aged 18-44 online between 28th- 30th March 2014. Data were weighted to be representative of all women aged 18-44 in GB by age and region. ComRes is a member of the British Polling Council and abides by its rules. Full data tables are available on the ComRes website – www.comres.co.uk

 

" title="">[2] The survey tested levels of awareness of different pregnancy infections and attitudes towards CMV prevention advice amongst British women of childbearing age.  Data on CMV prevalence comes from separate CMV Action analysis.

" title="">[3] In the survey, British women aged 18-44 were asked a question about their attitudes towards CMV infection and advice on the condition, after having read a statement explaining the risks of CMV and the measures that can be taken to prevent it.

" title=""> 

[4] For example, after reading information on CMV infection (which is available as a leaflet from CMV Action), 87% of British women aged 18-44 say that it is realistic that they would avoid sharing their baby’s dummies, their cutlery drinks and food with anyone and 70% say they would use a condom during sexual intercourse.

     

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