“Your child may not walk or talk and is probably blind.” This was the cheerful news my parents were greeted with shortly after I was born.
My mum’s second pregnancy (with me) had gone smoothly throughout apart from having a sore throat. My birth was a C-section which went well and I appeared healthy. However, my mum (who’s a GP) knew something was wrong. I weighed 5lbs 10oz, had a small head and failed my newborn hearing test. In paediatric training, my mum had covered congenital cytomegalovirus (CMV, where the mother is infected during pregnancy and passes it to their onborn baby) and was told that it can cause stillbirth, miscarriage and lifelong impairments. She had had no cause to think much about it since then.
What is CMV? It is a very common virus that many people have. Most people’s symptoms when they have CMV can be very similar to a common cold (like my mum’s sore throat) which means that when it comes to healthy people, it is very diffcult to notice they have the virus.
CMV can be spread by prolonged contact with bodily fluids. CMV Action estimate that a quarter of young children will already be infected with the virus. This is why it is very important that pregnant women, especially those working with young children, take risk reduction advice seriously, for example minimising contact with bodily fluids.
After my birth, I was referred to a paediatrician to investigate my cause of deafness. My mum pushed for me to be tested for CMV. The blood test came back negative, however my mum insisted on a urine PCR test (which is another way of beng tested for CMV) to be done. This came back positive. As a result, I was able to be treated with anti-viral medication within the recommend window of four weeks. If this hadn’t happened, potentially my vision and hearing could have been worsened. My muscle tone may have been affected as well.
Outcomes are considerably more positive with early detection and treatment. With this in mind, in March 2022, CMV Action, the UK’s only CMV charity, petitioned the government to add CMV to the list of recommended ante-natal screenings. The government’s response was as follows:
“Screening for congenital CMV (cCMV) is not recommended because:
- we are not sure if tests reliably show which babies with cCMV will suffer long-term health problems
- it is likely that screening will find a larger number of babies with the infection who will not have problems from it than those who will
- there is a lack of evidence that early treatment following screening leads to better outcomes than later treatment after symptoms
- currently, it is not clear what is the best way of treating children who do not have symptoms
The UK NSC will engage with stakeholders and the NHS to help improve awareness and knowledge of CMV among the public and health care professionals.”
CMV Action said it was “disappointed that CMV is not included in the routine screening of new-borns in the UK.
“We will continue to press for its inclusion,” the statement continued. “We believe, especially from evidence from several countries which do include CMV, that this allows for timely, efficient and cost-effective treatment. This is an opportunity that is sometimes missed in the UK when diagnosis relies on further testing only if a baby fails its new-born hearing test, often leading to costly delays. Early diagnosis also allows for the provision of education and resources to families affected as well as connection to information, resources and support which many so families that we work with say is vitally important.”
My own experience has often led me to think what my life would look like had I not had CMV. However, perhaps a more relevant question is what would have happened had I not received the antiviral medication in time. That this happened was mainly due to my mum’s professional expertise and tireless efforts to ensure the impact on me was reduced as much as possible by early intervention. Not all are so lucky.
There’s also the financial, as opposed to the human, impact. Screening may be expensive but is likely to be cost-effective in comparison with treatment and, in particular, the cost of long-term care.
These costs can be profound – and not only for the patient. Research carried out by CMV Action in 2018 found evidence that families face a significant economic burden due to the consequences of CMV. The report shows that CMV costs the UK about £750 million a year, a staggering figure supported by this 2019 article in PubMed. This is due to a mixture of direct spending by the state and lost productivity by the individual. It also tells of one family having to find £240 per month to fund specialist physiotherapy for their child. The expensive support that I currently receive from the NHS would have been greater still were I not to have been diagnosed and treated as quickly as I was.
I was tube-fed from six weeks, had hearing aids from nine weeks and six general anaesthetics before my first birthday. Years later, I am walking and talking. However, I’m still dealing with the consequences of the virus. I have seen speech and language therapists, physiotherapists, occupational therapists, dieticians, paediatricians. This support will most likely continue for the rest of my life. It’s possible that I will go into supported living when I turn 18, a difficult realisation that I’m coming to terms with.
You may wonder why I’m so open and honest about what has happened. It’s because I want to prevent this from happening to more people and their families. My experience of it affecting not just me but my family has shown me that for future generations, we must act.
There are simple things that can be done to contribute to prevention for pregnant women such as washing your hands after going to the toilet and before eating, not kissing toddlers on the lips and not sharing cutlery. If the NHS is not going to introduce screenings, I’d like the NHS to give out information informing women of CMV and what they can do to prevent it as an additional form of prevention. The matters of basic hygiene were drummed into us during the pandemic and helped to reduce infection. Perhaps there was something good about Covid after all…
Thanks to Sharon Wood of CMV Action, Christine Wheatley and Brian Quinn, all of whom in various ways helped me with writing this article.