Conclusion

     

CMV Action are recommending a number of minimum standards of care for pregnant women and babies affected by CMV (see box). These minimum standards of care can be introduced as soon as today. Experts attending an international CMV conference in Brisbane in May 2015 agreed unanimously that CMV counseling should be given to all pregnant women. Government and professional bodies in many countries such as the US, France, Australia and the Netherlands already recommend that this happens. However advice on CMV prevention is not routinely given within the NHS.

Most of the minimum standards of care that families with a baby affected by CMV should expect from health professionals can also be introduced immediately.

Over the longer term it is also important to address other aspects of CMV:

Managing infection in pregnancy:

The UK National Screening Committee recommends against systematic population screening for CMV in pregnancy. However individual cases will still be identified in the course of routine antenatal care.
Each health community should therefore develop and implement local guidelines for:

  • Testing for CMV should there be suspicion of infection.
  • Management and monitoring when infection during pregnancy is detected.

Diagnosing CMV in newborns:  

Research into treatment and diagnostic technology is underway.  As new evidence emerges the National Screening Committee should review its position on universal newborn screening.

Managing CMV after diagnosis:

Health professionals such as audiologists, paediatricians and neurologists, who are working with families, should ensure that monitoring appointments occur at recommended intervals.

Identifying late-onset problems:

Early years professionals and support workers must be aware of the particular risk CMV brings of late-onset and progressive hearing loss. They need to know how and when to monitor, and how they can assess whether hearing loss is caused by CMV.

Tracking longer-term outcomes:
Our understanding of congenital CMV  is still limited and there is an urgent need to monitor treatment and longer-term outcomes on a central UK database.

There are also steps that can be taken at a national level. Public Health England should recognise CMV as a serious public health issue and support work on public and professional education, in the same way that the Centers for Disease Control and Prevention (CDC) does in the US.

Research from other countries shows that implementation of guidelines can be hampered by lack of detailed knowledge of CMV. This is why, alongside this report, CMV Action is launching training for midwives and will invest in training for doctors and other professionals in future. Bodies responsible for professional training should also do more to ensure that doctors and midwives are confident in their knowledge of CMV prevention, transmission and management.

The National Institute for Health Research should support research into the prevention, detection and optimal management of congenital CMV.

We would also like to see an increase in research to develop an effective CMV vaccine.

We recognise that our vision cannot be realised overnight, that it will take time and collaborative working to deliver. But it can and must be achieved if we are to reduce the unacceptable burden on the hundreds of young lives blighted each year through congenital CMV infection.

Let’s start that process now.

Caroline Star

CMV Action Chair

 

Minimum standards of care for pregnant women

GPs should:

  • Advise women trying to conceive on how to reduce the risk of CMV infection in the same way as they recommend folic acid before conception
  • Advise pregnant women on how to reduce the risk of CMV infection in the same way they give advice on reducing the risk of food and animal-borne infections

Midwives should:

  • Alert all the women booking with them to the dangers of CMV infection: how it spreads and how to reduce the risks, in the same way as they already advise about food and animal-borne infections
  • Support women with specific concerns about CMV enabling them to access support locally

Radiographers, sonographers and obstetricians should:

  • Be alert to indicators that suggest a higher risk of CMV, such as fetal anomalies, and take appropriate action

Minimum standards of care for babies affected by CMV

Local health systems should ensure that guidelines and pathways are in place for testing, diagnosis and management of CMV. These would include:

  • Midwives, obstetricians and neonatologists should know the potential signs of congenital CMV in a newborn baby
  • A CMV test should take place as soon as hearing loss is confirmed and systems must be in place that make it possible to confirm or exclude CMV diagnosis within the first four weeks of life, so that treatment can be considered
  • The standard newborn hearing screen therefore needs to take place within a timeframe which allows diagnosis of congenital CMV within the first four weeks of life
  • Following a diagnosis of CMV, families should have access to a paediatric infectious diseases specialist to discuss treatment
  • Newborn Screening Laboratories should retain Guthrie cards (dried blood spots) for as long as possible but at least the minimum period of five years. This is to enable the diagnosis of congenital CMV in children who may present with problems during childhood, adolescence and as a young adult
  • The healthcare professional that is a family’s key point of contact must have knowledge of the evidence-based guidelines for managing CMV
     

Our Stories

Evie_CMV_5
My name is Alex and this is the story of how I came to learn about CMV. January 13th 2014, I was stood staring at the positive pregnancy test in my hand. After 5 months of trying for our... Read more
Alfie-CMV-Story
I wanted to share my CMV story, this is my wonderful little boy Alfie. I had a normal pregnancy and labour, I had Alfie at 11.30 at night and the next morning got him ready to take home... Read more

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