I found out I had CMV in pregnancy and thought I would share my experience in the hope that it might help (sorry if this is a bit lengthy!)
All had been well at my 12 week scan and I had hardly any sickness compared to my first pregnancy three years ago with my little boy Finley. Then at our 20 wk scan, we found out that our little girl had brightness showing in her bowel and were referred to Mrs Martindale at Lancashire Women and Newborn Centre for a consultant scan as bright bowel can be a marker for a number of problems. At this point we were mainly worried about cystic fibrosis. After looking at baby in detail she said she looked normal for this stage of development and it was concluded that I had most probably had a small bleed during early pregnancy which can cause the bowel to show brightness on a scan if baby has swallowed amniotic fluid containing blood. However, as an extra precaution she advised bloods to be taken for TORCH screening.
Nearly two weeks later, I received a letter for an appointment with a consultant at the Rossendale Clinic where I was told I had contracted a CMV for the first time while in the early stages of pregnancy and although this virus was completely harmless to me (I had no symptoms whatsoever), if my unborn baby had contracted it, it could potentially cause serious problems to her brain development. I was given an appointment for the very next day to have another scan with Mrs Martindale at LWNC focusing mainly on baby's brain and an amniocentesis if I wanted it. At this point I was 23 weeks pregnant and I weighed up the risk of going into early labour after having an amnio and decided not to have the test done. I love my little girl no matter what and was not going to put her at risk when even if she did have CMV there was no treatment available to me. I had regular scans with Mrs Martindale who is absolutely fantastic. I still find it hard to believe we don't have a treatment for all pregnant women who contract CMV ( I've read someone had a drip?) and I felt like there must be something I could do to help my baby if she did have CMV and so after discussion with my midwife I started taking pregnancy vitamins which aided brain development and ate as much fish and nuts as I could stomach! My community midwife knew nothing about CMV. I found myself telling her about it and had a lengthy discussion with her after I had done a bit of research on your website - she was the one asking me the questions! This is so wrong.
Baby was developing as she should and there were no calcifications showing. Her head was measuring within the normal range, however there was a concern that the third ventricle in her brain was slightly enlarged. Mrs Martindale spoke to Dr Bullen at St Mary's Manchester regarding my case, but he said there was no point in seeing me as I did not want my amnio tested and because of this, he couldn't really give me any more help than Mrs Martindale had. I had regular scans up to 36 weeks of pregnancy. At 38 weeks I had an appointment with one of the neonatologists at LWNC to discuss what would happen when I went into labour and after the birth. I would have to have to have my baby in the birth suite of Burnley Hospital where Doctors were immediately on hand if they were needed and I was allowed to go into labour naturally and have sweeps/ induction at the normal times if needed. We were told that if baby had symptoms of CMV at birth there was a treatment that would be given and that it would be administered over 6weeks and was quite intensive, but she didn't want to give us the ins and outs in case baby didn't need it and she caused us unnecessary worry. If baby showed no symptoms of CMV at birth, then she would be treated as asymptomatic i.e. that she had CMV but showed no symptoms and so would just have bloods and urine tested along with another brain scan.
On the 4th June 2014 at 14.05, Evie Grace Saxton was born weighing 7lb15oz in Burnley Birth Suite. Evie had a brain scan, urine and blood tests done the next day. Her brain was perfectly normal and she was showing no obvious symptoms of CMV whatsoever. We took her home that very same day and after two weeks of waiting received a letter to confirm that Evie's blood and urine tests showed that she had never contracted CMV. Evie is ten weeks old now and has one last appointment with the Dr at LWNC in September to check her over as she had been exposed to CMV while I was carrying her. I cannot thank everybody at LWNC enough for the outstanding level of care we have received and I hope by sharing this story it might give somebody going through the same thing we did some help.
I have done quite a bit of research on CMV since finding out I had it and I have read so many inspirational stories about children born who are living with severe effects of CMV. I can't believe how little is known about the virus. I think we need to raise awareness of CMV and how dangerous it can be to pregnant women. CMV Action UK is doing a fantastic job and I am going to share as many of your stories as I can!
Caroline, Evie’s mum