#stillBORN campaign - Oscar’s story of CMV

After trying for a baby for two years, we luckily became pregnant with our first child just two days before we signed the paperwork to undergo IVF treatment. A lucky miracle I call it. I’d spent so much time looking into fertility and how difficult getting pregnant can actually be!
I’m also a midwife of eleven years, with experience mostly on the labour ward but also in teaching and more recently community, so seeing people everyday and them telling me their ‘lucky’ stories of falling pregnant made my two years very long indeed. However, we were lucky, we had no bleeding, no blood pressure issues, the downs screening came back very low and despite sickness that lasted until 22 weeks and horrendous heartburn, I couldn’t complain!

My midwife started measuring me at 26 weeks, when she picked up that I was SFD (small for dates.) I also never felt my baby move.
I started undergoing serial growth scans. I send my own patients for these all the time and they generally come back fine, so I wasn’t worried. My consultant did a TORCH blood screen for infections. The TORCH screen is a group of blood tests that check for several different infections in a newborn. TORCH stands for toxoplasmosis, rubella, cytomegalovirus, herpes simplex, and HIV, but it can also include other newborn infections.
Well I knew I was fit and healthy and didn’t have any infections, but it’s only a blood test, so why not?

That’s when my world crumbled. I had had CMV at some point during the first trimester, meaning my baby could be infected. Although reassurances told us he may not be ‘affected.’ Whilst I’d heard of it, I had never known anyone who had had cmv. How on earth had I picked this up? Where had it come from? This was my fault. Of course I’ve since gone on and read about it more and realise how easy it is to contract and with all my work with families and children, who knows where it came from?

We started googling, and found that he may have some learning disabilities or mild hearing loss, not a problem we thought. The consultant suggested an amniocentesis, which we had at 33+1 weeks. We also had a brain scan which now showed ventricularmegaly, some brain abnormalities.
We then went onto have an MRI scan at the John Radcliffe Hospital in Oxford.

Our baby was diagnosed with severe CMV, there was poor growth, enlarged liver / abdomen, a small head and no brain activity at all.
Our beautiful baby Oscar William, was stillborn at 33+6 weeks, on 9th March 2015, my shining star.

I just wish I had been told how easy CMV is to contract, it’s so simple, good hand hygiene around children. CMV is contracted from saliva and urine of children, so no sharing of food and cutlery and washing hands after nappy changing. Being a community midwife I’m sure I’ve played with toys that have probably been in a child’s mouth, or maybe the glass of water they gave me to drink wasn’t clean, maybe it was finishing my nieces ice cream…I’ll never know where it came from, but it can be so easily prevented.

The care I received was fantastic. Being staff may well have helped. My consultant referred me to a specialist unit, but also gave me her private mobile number. The knowledge of the team in Oxford was outstanding and finally the follow up care from Tracy, the bereavement support midwife has been exemplary, she seems to be the only one who truly understands the milestones and what to say to me. I’ve also sought advice from CMV Action, a volunteer based charity striving for awareness of this dreadful infection. I too now, work for them as their midwife trustee, offering support to other women who’ve been diagnosed or need advice on blood results etc.

Sharon Robinson