It took just three letters and three days for my world as I knew it to change. CMV. I’d learnt about it briefly during a short stint studying midwifery. I knew the risk and followed the precautions. Yet, at just three days old, my twin daughters were diagnosed with congenital Cytomegalovirus – contracted in the first trimester of my pregnancy. I recall sitting in the nursery wondering, “If an infection shortened to just three letters could wreak such havoc on my world, how could it be that barely three individuals in my life knew what it was?”

In that moment, I understood that antenatal education was necessary for more than prevention. It was crucial for early detection and intervention.

My knowledge of CMV came from a year and a half of midwifery study four years prior and was limited to not changing nappies, not sharing drinks with toddlers – the standard precautions doctors recommended to prevent a primary infection during pregnancy. In May 2023, I underwent a stem cell transplant for a refractory autoimmune disease. As part of my pre-transplant work-up and post-transplant monitoring, I was screened monthly for infections such as Cytomegalovirus and Epstein-Barr Virus, which could reactivate while my immune system was weakened.

During my pregnancy, CMV did not cross my mind in the way it might for an expecting parent who works in childcare. It did, however, encourage me to remain cautious to the point of avoiding children altogether.

Due to antenatal depression, the majority of my pregnancy was spent at home, with very little contact or interaction with others – let alone sharing drinks with children or changing nappies. So when my daughters received their diagnosis, I was confused, because I was well informed and had been so cautious.

At 33 weeks gestation, both of my twins were experiencing IUGR, and we were subsequently having regular Doppler scans. By chance, an ultrasound technician picked up enlarged ventricles in one of my babies’ brains, and I was sent for a fetal MRI. That proved unsuccessful, but an appointment with the Maternal Fetal Medicine specialist revealed that I had been exposed to CMV at some point – just not recently. I remember feeling lightheaded and defensive because I knew I was CMV negative. I insisted they look at my previous screenings. They found results from a couple of months prior to pregnancy showing I was CMV negative, indicating it was likely I had contracted a primary infection during pregnancy.

We were still not convinced that both girls had contracted congenital CMV, as the abnormalities on the scan appeared isolated, but I was adamant I wanted them tested at birth. The doctors suggested repeating their cranial ultrasound at birth too. Had I not known my CMV status was negative prior to pregnancy, I firmly believe my daughters may not have been tested until they became symptomatic.

My twin girls were delivered at 33+6 and presented quite typically for the first few days. Their cranial ultrasounds in the nursery, however, showed calcifications, cysts, a Grade 1 IVH, and mild ventriculomegaly. One of my daughters also developed low platelets and required a transfusion at three days of age. Later that night, the doctor delivered the news that my heart already knew – both girls had congenital Cytomegalovirus, and their brains were significantly impacted. I remember bursting into tears when the impact of the virus was explained to me. Knowing that the virus had passed from my bloodstream to my daughters emotionally destroyed me in that moment. I tried so hard to pinpoint where I went wrong and what I could have done differently, but my mindset very quickly shifted into gratitude that both girls were tested so soon. This meant they were given the chance to start a six-month course of antivirals and potentially minimise further damage.

Our experience with early detection feels bittersweet, as it made it difficult to cherish those first, precious moments of motherhood but simultaneously allowed my daughters to access the antiviral medication and early intervention they needed. From that very moment, I stepped into my role as not only a mother of two but a full-time carer and advocate for my daughters.

It was later determined that one of my daughters was born deaf, and both girls had diffuse bilateral polymicrogyria that could potentially lead to seizures and movement disorders. Currently, the full impact of the virus is unknown – but both girls live with spastic cerebral palsy affecting all four limbs and developmental delays. At just two months of age (two weeks’ corrected gestation), both girls began physical therapy and other early interventions, which have greatly improved their development and will hopefully allow them to reach their individual goals and potential. In our little household of three, we focus on every milestone, every achievement that we might otherwise have taken for granted in another life without CMV. Raising and caring for two children with such complex disabilities was something I had never imagined while pregnant, but it is something we have rapidly adapted to. Chaos has become our new normal.

Through our experience with CMV and advocacy, my daughters and I have connected with other families impacted by CMV – many who had not heard of it during pregnancy and did not have typical risk factors such as working in childcare or having young children at home. One consistent theme we have encountered is not only the lack of awareness and antenatal education, but also the reliance on prevention alone. Many media campaigns are targeted toward prevention during pregnancy, but one area often overlooked is early detection. Prevention is critical, but it is not protection.

In my lived experience, had I not been aware of my CMV status prior to pregnancy simply by chance, my daughters may not have been tested so early. If their cranial ultrasound had not been repeated because the doctor knew I had contracted CMV during pregnancy, my daughters may have missed the window of opportunity for antivirals. Without early detection, my daughters may not have accessed early intervention as soon as they did.

Over the last eight months, I have compared our family’s experience with CMV to that of others we have met. Learning your child has contracted a devastating infection in utero is heart-wrenching, and from my lived experience, I found myself feeling as though it was my own fault for “failing to prevent it.” This is a common theme among CMV parents I have observed, and it is at the heart of my advocacy.

We have met countless families whose children were diagnosed beyond the window for antivirals because they were born asymptomatic, but with a head circumference in the first percentile. Some later failed their newborn hearing screening or experienced developmental delays, only being diagnosed when their newborn blood spot was retested. By this point, hearing may already have declined and the window for neuroplasticity and early intervention narrowed significantly. Stories like these are why advocacy for antenatal education and early detection holds such importance for me.

A lot of the media campaigns I have seen for CMV are often met with backlash online for fearmongering. Often referred to as rare, unlikely, and something expecting parents should not have to concern themselves with. But this is where antenatal education falls short, because prevention is not foolproof. In experiences like mine, where I had not seen or had any contact with children during pregnancy and had taken all of the standard precautions but still contracted CMV, education should not cease there. Many CMV parents I have met recall experiencing a terrible cold during pregnancy – which they believe was when they acquired their infection. If antenatal education extended beyond prevention, these parents might have been screened during pregnancy and their child’s infection diagnosed at birth rather than months or years later. This is where my lived experience contrasts with many other families – because of early detection.

Fast forward to today, my daughters are the most delightful and happy little girls I have ever met. Sure, life has thrown more than its fair share of challenges their way in just nine months. But they are exactly who they were always meant to be, and exactly where they need to be – two little girls who have taught me more about life in the last month than anyone has in my twenty-seven years. Though I’d like to make life easier for them so they did not have to struggle so much, I would not change them for the world!