Congenital cytomegalovirus (cCMV) is not a rare virus, but little awareness of it exists. It has been referred to as an ‘intelligent’ or ‘stealth’ virus. It has evolved to pass unnoticed and often unknown, until it is too late. The charity CMV Action aims to shine a light on cCMV, to help reduce its potentially life-changing effects on newborn babies and children.
CMV is part of the herpes virus family and is incredibly common. Most people have had it without knowing or might have mistaken it for a mild cold or flu (NHS, 2023). However, if passed to an unborn baby, it can lead to cCMV, the most common infectious cause of birth defects (Dollard et al, 2007; Kenneson and Cannon, 2007).
As many as 1 in 200 newborn babies are born with cCMV (Kenneson and Cannon, 2007). The majority will not have any symptoms but around 1 in 1000 babies born in the UK every year will be severely impacted (Dollard et al, 2007), equivalent to approximately 900 children every year. The potential long-term health impacts include deafness, developmental delays and vision loss (Leruez-Ville et al, 2024). cCMV can also cause miscarriage and stillbirth. It is more common than Down's syndrome, spina bifida or cystic fibrosis (Dollard et al, 2007; Kenneson and Cannon, 2007; Townsend et al, 2011).
How can midwives help?
CMV is spread through bodily fluids, particularly from young children. Pregnant women, especially those with young children or working in environments like nurseries, are at greater risk of exposure. The updated National Institute for Health and Care Excellence (2023) guidelines recommend that pregnant women are made aware of CMV at their first antenatal appointment (later, if appropriate) and encouraged to take simple hygiene measures:
Although pregnant women are often asymptomatic, CMV can occasionally present with mild flu-like symptoms, such as fever, sore throat, fatigue or swollen glands. If a midwife suspects a pregnant woman might have a CMV infection, they can refer her to be tested. If the tests confirm CMV, the pregnant woman could be given antiviral treatment (Leruez-Ville et al, 2024).
Midwives should be vigilant for symptoms of cCMV in newborns, including jaundice, a rash, low birth weight or small head size (microcephaly). Advocating for testing in the first 3 weeks of life could make all the difference, as timing is critical. During this window, cCMV needs to be confirmed and antiviral treatments started within the first 4 weeks. Early treatment can potentially reduce long-term complications (Leruez-Ville et al, 2024) and impact the progression of hearing loss.
Hearing loss is often the silent legacy of cCMV. In the UK, 25% of preventable hearing loss in childhood is a result of cCMV (Manicklal et al, 2013). Any baby who fails the newborn hearing screen should automatically be tested for cCMV. While this is a major step forward in detecting the virus, this is not universally carried out (Walter, 2024). It is also important to be aware that some babies will have delayed onset of deafness, so will not be identified by the screening.
For mothers and families facing a diagnosis of cCMV, the news can be overwhelming. Midwives can provide emotional reassurance, direct them to relevant resources, such as those on the CMV Action website, and ensure that they are aware of supportive measures and services available to them.
How can CMV Action help?
CMV Action is the only charity in the UK supporting families affected by cCMV. The charity can provide free, easy-to-understand educational materials to share with parents, as well as training workshops and webinars tailored specifically for healthcare professionals, keeping you up to date with the latest guidelines and expert advice. The charity also provides awareness raising packs, which include posters, leaflets and publications to spread messages about cCMV.
A mother's story: Hope, cytomegalovirus and Mel
In some ways, we were fortunate that cCMV was picked up during my pregnancy. At my 20-week scan, the sonographer noticed that our baby's head was smaller than expected. A follow-up blood test was positive for CMV and when they tested my bloods taken at my booking appointment, it confirmed that the CMV infection was recent. I had never heard of CMV, and I have had to educate myself, and others. Looking back now, I remember me and my oldest daughter, Amelia, having what we thought was flu, just before I found out I was pregnant. This was most likely a CMV infection.
At around 26 weeks, we had a fetal MRI that revealed calcifications all along the right side of our baby's brain. At this point, we knew that our baby was going to experience the world differently, but we had no idea what this would mean for her or us. We were offered a late-term termination but, at this point, I had felt her kicking, letting me know she was here, and I just knew that she was a fighter. As we went from one appointment to another, I turned to my husband and said ‘let's call her Hope’.
Hope was born on Christmas Day. I do not know what those first moments were like for Hope, but I am grateful I did not witness it. Hope came into the world blue and she was not breathing. I haemorrhaged while they worked on Hope. She had an enlarged liver, heart and spleen. The delivery team managed to stabilise her, giving her one of a number of blood transfusions, before taking her by ambulance to a specialist hospital 1.5 hours away. I was still in our local hospital when I received the call from my husband and father, who had gone with Hope, to tell me that they believed Hope was going into multiple organ failure and that they were planning her end-of-life care. It did not look like Hope would make it through the night. Defying all odds, I managed to get out of bed, get dressed and travel 1.5 hours to Hope on the same night that she was born. And Hope, defying all odds, made it through Christmas night.
We knew that Hope's team were not taking this day by day, or hour by hour, but rather minute by minute. She was so poorly. We prepared to say goodbye because we wanted her to know that we were already so proud of her. We needed her to know that we were not angry and that if she wanted to let go, it was okay and that we understood. But Hope was a true warrior, and, on 19 January, she was discharged.
Hope has global development delays, hearing loss, cerebral palsy and epilepsy. But none of this defines who she is. She is a happy, strong, resilient little girl. She has just started school. She has a big sister who has had to grow up too fast, as many children who have a sibling with complex medical needs often have to. She also has a younger sister, Luna, which is remarkable because after Hope's birth and start in the world, I was diagnosed with post-traumatic stress disorder and never imagined I would have another baby.
As a parent, I try hard to protect Amelia and Luna's childhoods, but I know that sometimes you cannot hide the complexity of having Hope in our lives. It has been overwhelming for Amelia to witness Hope having seizures or me giving her CPR.
People ask me if I would want to change what happened to Hope. But here is the thing that might be difficult to understand: I would not change any of it. Any of her. I would go through everything again to have the little girl I have today. Just as she is. Because anything else, is just not Hope.
There is something that I really do want to change: the lack of information about CMV. Not just for the general public, but for people planning to get pregnant and healthcare professionals working with pregnant women and newborns. I would like you not to feel sorry for us. Instead, find out more about CMV and talk about it, with everyone. Because the more people that know about it, the more families we can protect and support. Together, I believe we can truly make a difference, and I leave you with this shared sense of hope.