A New Chapter and an Unexpected Diagnosis
It was October 2018. The nausea of the first trimester was passing, and exhaustion was beginning to be replaced with a mild pregnant glow. Our daughter was about as excited as any 2-year-old could be at the prospect of becoming a big sister, albeit with next to no comprehension of how long the remaining 5½ months really were.
My husband had been unwell for maybe a month. No one thing, rather lots of smaller issues (almost permanent tiredness, no appetite, hot sweats, among other things) and he just couldn’t seem to shake them. None worthy of a trip to the GP alone, but together gradually became a cause for concern, so he had been back and forth. Appointments and tests had been inconclusive so far.
Eventually, word came from the GP that he had a virus: Cytomegalovirus (CMV).
We had never heard of it. The virus was part of the chicken pox family of viruses, we were told. We had both had chicken pox as children, yet wondered if there might be any implications for the pregnancy, given the known risks of contracting chicken pox during such a time. A call to the GP – who went away to look up our question and subsequently called us back – confirmed that yes, there could be implications for the baby. I went in for a quick blood test, the results of which were compared to my original bloods taken at my first midwife appointment and concluded that I had contracted the virus between 11 and 16 weeks.
Navigating the Unknown
Confused and essentially unsupported, we turned to Google. We had hoped for – and even expected – a barrage of information, but were met with really very little. The information we did find was primarily focused on how to prevent the virus; too late for us. In the UK, CMV Action was (and is) the only charity supporting families with CMV. The website gave us information and hope for the future, and offered a level of comfort through knowing that we were not experiencing this alone. Reaching out to the volunteer team made a big difference, however what we really needed in those early days was a crystal ball to show us what baby’s future would look like.
I was immediately placed under the care of the Fetal Medicine Unit (FMU) at our local hospital in Oxford where fortnightly consultant-led scans were planned, an amniocentesis booked and an MRI scan scheduled. The rollercoaster began. Initial scans under the FMU looked great; perfect in fact. Maybe I hadn’t passed the virus on? Those hopes were shattered a couple of weeks later when the amnio confirmed that the virus had not only been transmitted but it had done so with a high viral load.
Given that a possible lack of hearing was the primary concern at this stage with the diagnosis of cCMV, we met with representatives from the Paediatric Hearing Loss team to begin to understand what we could do to prepare ourselves for life with a child with hearing loss. We felt anxious yet positive, making a decision that we’d adapt, and all learn sign language together.
Whilst the amniocentesis hadn’t given us the news we had hoped for, the scan that followed looked so positive, so “normal” that fortnightly scans were reduced to 4-weekly.
From Hope to Heartbreak
The gap of 4 weeks spanned Christmas, so we – our immediate and extended families – enjoyed the festivities with the concerns temporarily pushed to the back of our minds. Baby was kicking, I was growing and we felt tentatively optimistic.
The next scan, early in 2019, was sadly the start of a different story. Fluid was spotted around a ventricle in baby’s brain, and elsewhere, two cysts had started to grow. Not wishing to panic unnecessarily, these were deemed inconclusive and the MRI was brought forward from 32 weeks to 29 to discover more.
The MRI results proved to be conclusive in that there was now evidence of increased fluid, growth in the cysts, and a diagnosis of severe brain damage as a result of cCMV. Even with this diagnosis, it was still unclear exactly how the brain damage would manifest, and how our baby’s life might look. We went away, cried a lot, processed the news, cried a bit more and began to come to terms with everything.
At our next scan on February 1st 2019, we discovered that our little girl no longer had a heartbeat. Devastated, we returned home for the weekend, returning on Monday to be induced. Labour was lengthy but the care we received was exceptional. We finally met our beautiful baby Eva on the morning of the 6th February.
Our parents, siblings and daughter came to visit at the hospital, each taking the opportunity to cuddle and grieve for their granddaughter, niece and little sister respectively. The room was designed for those who have lost a little one, with a cold cot allowing Eva to stay with us for as long as we were there. We stayed for two days before saying our heartbreaking goodbyes – memory box, containing hand and foot prints, counselling information and professional photo reference numbers in my arms, but no baby.
Carrying Eva’s Legacy Forward
With the announcement of Eva’s birth came the first charity fundraiser. The generosity of family, friends, colleagues and even complete strangers was simply incredible. So unbelievably moving. In those early days of heartbreak, it felt good to be able to give something back to those who had helped us.
Since then, I have announced a fundraiser on Eva’s birthday each year for the charities that supported us throughout my pregnancy and beyond.
I think giving back to these causes is my way of being a mum to Eva, and I hope I make her proud.
Just this year, the opportunity arose to join the CMV Action team as a trustee. I leapt at the chance to be a part of such a small yet wonderful team, fighting the battle to raise awareness of the virus and supporting families who are living with a diagnosis. It has been a rewarding first eight months, with some real ground being made in the peer-to-peer support area, something that had been requested by our families. I’m so pleased to have played a part in that.
Looking Ahead
Going forward, my personal focuses are twofold. Firstly, I would like to increase awareness of CMV amongst early years settings and throughout the medical profession, certainly local prenatal teams, in order to aid the prevention of the virus. Secondly, given that CMV is not tested for routinely in the UK, it is uncommon for there to be a cCMV diagnosis during pregnancy. My case was something of a rarity. As a result, the information and signposting surrounding “what next?” is minimal and can leave the pregnant family feeling lost. I’d like to improve that.
Help Us Support More Families Like Ours.
CMV Connect is our new way of connecting with families and individuals impacted by CMV. We’re growing our services and expanding how we support and bring families together through diagnosis, grief, and beyond. To continue this important work — raising awareness, improving support, and making sure no one feels alone — we need your help. If Eva’s story moved you, please consider making a donation. Every contribution helps CMV Action reach more families, faster, and with the care they deserve.
