When we found out Soph was pregnant on New Years' Eve, we were thrilled. The early weeks were a nervous wait after previous losses, but with a sigh of relief at week 12, we began telling family and friends our happy news. Soph was at high risk of pre-term labour again and was admitted for preventive surgery at week 17, but this went well and we were discharged from hospital care for the remainder of the pregnancy. All was fine until our twenty week scan when the sonographer spotted the baby had a bright bowel. In ninety seven per cent of instances, this is entirely benign, so we tried to stay positive while we were referred to King’s Fetal Medicine Centre for further tests ten days later.

The consultant spent an hour scanning and could now see four issues with the baby - her heart, bowel, and most concerningly, her brain and head. She asked if we had another child at home who attended nursery - which we do. She was concerned about a possible CMV infection. CMV, or cytomegalovirus, is a mild virus very common in nurseries. Anywhere from 50-80% of adults have already had it, but getting it for the first time in early pregnancy can be absolutely disastrous for a growing foetus if it crosses the placenta. We were sceptical that was the cause - blood tests from our maternity hospital showed Soph had CMV antibodies, but given the degree of concern expressed by the consultant we agreed to an amniocentesis (an invasive test which carries its own risks) to know for sure.

Three days later, we received the devastating news that Soph had caught primary CMV at weeks 8-10 and it had passed to the baby, which explained everything we were seeing on the scan. The antibody blood test was showing a recent infection, not an old one. In shock, we took in the news as the consultant explained the full extent of the damage that had already occurred and the significance of what it would mean if she were to survive birth. Just four days later, we said a heart-breaking goodbye to our precious baby girl at 22 weeks.

We are still in shock that having very fortunately conceived an otherwise healthy pregnancy, our baby came to so much harm from something neither of us have ever heard of and could have been prevented. Everyone knows pregnant women shouldn’t eat rare steak, soft cheese or raw fish, but no health professional or pregnancy literature mentioned CMV to me until it was far too late. The key things are fastidious handwashing and not sharing cutlery or food with your child - as a toddler Mum this is a near constant activity and most people wouldn’t dream that this is in any way dangerous to a pregnancy. Knowing what we know now, we would have paid for an antibody test before even trying to get pregnant to better understand the risk. Ironically Soph actually did this for toxoplasmosis antibodies in her first pregnancy, but had no awareness of CMV.

While what happened to us is rare, there are 2,400 babies born with congenital CMV every year in the UK, with varying levels of harm caused depending on when the mother caught the infection. 1 in 4 cases of hearing loss in the UK in children is down to CMV and it’s a major cause of significant childhood disability. The level of impact doesn’t appear to match the level of awareness.

Our goals are

1. Awareness. We want every pregnant woman, especially those with children in nurseries, to be aware of CMV and the risks it poses so they can take preventive measures, especially in those critical first 12 weeks. If you know someone in this situation, please mention it to them or direct them to Tommy’s/NHS for more information. Our nursery has been wonderful and will now highlight CMV annually. Pregnancy is an anxious time and while it’s not helpful to scare people, it’s a risk like any other that pregnant women should know about.

2. Funding. We would be really grateful if you would consider making a donation in our baby’s memory to CMV Action to support the work they do.

If we can spare just one family the heartbreak of what we have gone through, we will at least feel our baby has some kind of legacy from her short time with us.

Soph and Bryn xx