I did it! I'm so proud. My 2017 resolution was to raise £1000 for CMV Action UK and this evening I exceeded this target after a cake sale at work and donations from friends. I'm so proud and overwhelmed by my friends' support! https://uk.virginmoneygiving.com/katieroper
In 2017, my one and only New Year's Resolution is to raise £1000 for CMV Action, a charity which works to raise awareness about CMV and provide support for families affected by congenital CMV infections.
As part of this fundraising venture, I plan to run the Wollaton 10K race in June.
Please take the time to read our story below.
In November 2016, we welcomed our second daughter, Clara, into our family. Whilst her arrival was a happy event, we were also worried about Clara, as I had contracted an infection in pregnancy called CMV, which is the leading cause of birth defects (more than Down Syndrome, Toxoplasmosis or Listeriosis). In the weeks before her birth, CMV Action offered support and advice to me at what was a very worrying time.
Clara had a brain scan and blood tests (the first of many!) within 2 hours of birth. CMV Action were there to offer me advice within hours of her birth when I was advised by a poorly-educated paediatrician not to breastfeed her.
At one week old, Clara was diagnosed with congenital CMV.
Whilst we heard several people (some were experienced midwives) say that CMV is "very rare", this is in fact not the case. CMV is a very common virus which 50 - 80% of people have contracted by adulthood. It is often symptomless and is usually harmless, unless it is contracted by pregnant women or those with immunodeficiency. We believe I contracted CMV at around 28 weeks pregnant when I had flu-like symptoms for four weeks.
I was not alone. Approximately 1% of pregnant women contract CMV and 1 in 150 babies in the UK is born with "congenital CMV" which is the name given to the infection when it has been passed to infants in the womb. Of these babies, around 13% will have problems at birth and a similar number will develop problems later in childhood, most commonly hearing loss. Babies born with symptoms are most at risk from the more severe effects of CMV, which include brain damage and associated developmental delay and moderate to severe learning difficulties. First trimester infections tend to be the most harmful, sometimes resulting in miscarriage or infant death. Much has been made of the Zika virus and how it can cause microcephaly, but CMV is far more common and can also cause microcephaly.
CMV is spread through bodily fluids and some studies suggest that up to 80% of children in day nursery settings carry the virus. Maintaining good hygiene is helpful in avoiding the virus, but it can be difficult to do this when you live with a small child whose nappies you change and who wants kisses and to share their food with you. The only truly effective way to combat CMV is to introduce a vaccine, which is one of the things which CMV Action actively campaign for.
Clara was born without symptoms and is thus far thriving, for which we are so grateful. However, for 12 weeks of pregnancy, we did not know if she was infected, although we had regular scans at fetal medicine to check her growth and health. We still do not know for sure when I contracted the CMV virus. We remain under the care of a neonatologist and Clara will need regular hearing tests to age 6. Hearing loss, if it happens, may be partial or complete, and may happen gradually or overnight. She is also at risk of other complications, such as developmental problems.
For more stories of children with CMV, many of whom are living with severe problems, please visit: http://cmvaction.org.uk/our-stories One story on there is about Mike, whose mum, Rebecca, has been a huge support and inspiration to me in recent months.
CMV Action is a small charity but it undertakes vital work. Please help me to show my gratitude to them, and help to raise awareness, by sponsoring me.