Executive Summary & Forward

     

Over past decades, one by one, the scourges of polio, measles, mumps and rubella began to be eliminated in many countries. So why in the golden era of vaccine research has CMV been left behind? In the past it has been seen as too complex a virus. But the zeitgeist has now changed from ‘if we get a CMV vaccine’ to ‘when we get a CMV vaccine’.

We now know more about how CMV is spread. The main way that pregnant women catch CMV is from the urine and saliva of small children. There is a growing body of research that shows that providing pregnant women with this information can reduce the risk of acquiring CMV in pregnancy. We also know that pregnant women are highly motivated to follow preventative advice and that British women of childbearing age want to know more about CMV.

In the US, many states are legislating to mandate better education and more rapid diagnostics. Public health and professional bodies in several countries already recommend that health professionals discuss CMV with pregnant patients.

 
So how can this information be delivered effectively in the NHS? Midwives are perfectly placed to give pregnant women advice about four simple hygiene precautions. However, many will have received minimal education on CMV since their initial training. Midwife educators should prioritise continuing professional development on CMV to equip midwives with the knowledge to make a vital difference.

Even when infection in pregnancy is identified, there are many frustrations in managing it. Unlike many other infectious diseases, there are few prevention and treatment options.

There is an urgent need for more research into vaccination and treatment to prevent the devastating consequences of fetal infection. In the meantime,  it is important that obstetricians and other professionals involved in antenatal care improve their understanding of susceptibility, infection and transmission.

it will take time to achieve the vision of fewer babies being born with CMV

While research into CMV has traditionally lagged behind other viruses, our understanding is now evolving in more exciting directions than ever before. We also know more about the gaps in research that we need to fill and the UK is at the forefront of finding the answers. So as we near the 65th anniversary of the isolation of the human form of this virus, might science now be close to pensioning it off? 

Given the far-reaching consequences for children, families and public services this is a goal that desperately needs to be achieved. But the good news is there’s plenty that can be done right now at little or no cost. GPs and midwives can advise women about reducing the risks of infection. Obstetricians, sonographers, radiographers and neonatologists can be alert to the potential signs of CMV infection in a fetus or newborn so that more newborn babies can be diagnosed and treated within the first four weeks of life. Paediatricians, and other professionals working with families, can understand the guidelines for managing CMV so that more families receive the monitoring and support their child needs.

We realise that it will take time and collaborative working to achieve the vision of fewer babies being born with CMV and better support in place for those affected. 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.

Every year in the UK, CMV infection affects almost 1000 babies. It places an extra burden on the NHS, social care, welfare and education systems, as well as the children and families who live with the consequences of the virus.

Lyra is my granddaughter and as an educational professional (I am a Teacher of the Deaf) I was shocked that so few of the healthcare professionals we met had heard of CMV. Even fewer knew how to manage it. Yet CMV is not rare:
it is more common than Down’s syndrome and even infections that all pregnant women are warned about such as toxoplasmosis and listeriosis.

CMV Action is committed to raising awareness of this virus. Our hope is that this report, We need to talk about CMV, will alert prospective parents, families, healthcare professionals and those running the health service of the threat of CMV.

We need to talk about CMV:

Brings together evidence demonstrating that CMV is a serious public health issue

Sets out, for the first time, what different professionals can do now to limit the impact of this virus

Outlines the research needed now, and in the future, including finding a vaccine for CMV

CMV Action’s vision for the future is one where fewer babies in the UK are born with CMV and better support is in place for those who are affected. I hope this report will raise awareness of CMV and inspire readers to support all efforts to educate, vaccinate and eradicate this devastating virus.

We can reduce the impact of CMV. And we need to start now.

 

Trustee and Secretary of CMV Action

 

Lyra was born to parents who had never heard of CMV. The pregnancy was straightforward but it was evident at birth that Lyra was a very sick baby; her parents were told she might not survive. 

The doctors treating Lyra diagnosed CMV infection quickly but admitted they knew little about the infection and were liaising with specialists in London. They started treatment with anti viral drugs the day after she was born. 

Scans and tests showed chronic liver damage, low platelets and extensive brain damage. Lyra’s parents were told that it was unlikely she would ever walk or talk and would probably never even know they were her mum and dad. They had to come to terms with the knowledge that their daughter was severely mentally and physically disabled and medically fragile. 

Blood tests showed that Lyra’s mother had contracted the virus early on during the pregnancy but the infection and resulting damage had not been identified. 

Lyra is now nearly 3 years old. CMV has affected her whole body. She has severe cerebral palsy. She can’t roll, sit or hold her head up. She has chronic liver disease, epilepsy that is complex and difficult to control, damage to her lungs, kidneys and spleen, scoliosis of the spine, dislocated hips, feeding difficulties and more. She can’t fight infection. She is blind. But she can hear and she smiles for her mum and dad. Those smiles are priceless.

 

Jan Pearman

Grandparent

 

Read the full report here: "Let's Talk About CMV"

More individual sections published over August. 

     

Our Stories

Everything had been going fine with my pregnancy until the 18-week scan. Then I was told I had my dates wrong and they put me back by 5 weeks, originally it was August 15th, now it was... Read more
Mia
Hello, this is Mia, she is 6 months and 2 weeks old and I got diagnosed with cmv when I was 6 months plus pregnant. It was a horrible time we only found out as I got really poorly and could... Read more

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