My name is Amanda and I’m 36 years old.
After 3 years of trying for a baby through 2 rounds of IVF, I conceived twins. At 5 weeks I broke out in a rash all over my arms and legs. Doctors kept telling me it's allergy. I spent days at the A&E and finally my GP ordered a blood test to check. Following weeks of investigations, I was tested CMV primary infection positive.
This was the first time I had heard of CMV. My couple of weeks pregnancy joy died there and then. I tried to keep positive and grasp on the idea that the risk of transmission was low early in pregnancy. At 9 weeks the babies looked fine. However at 12 weeks, one of them had died and the other had severe skull abnormalities, acrania, not compatible with life. The only option was termination. My beloved pregnancy and all my hopes died. The only thing that helps me go on is that I found out early and could terminate without having to go through later stage termination. While acrania is not a known result of congenital CMV, the obstetrics and virology teams at Kingston and St George Hospital in London agreed that in this case, it was due to CMV, as CMV was seen in foetus DNA post termination.
This episode affected us tremendously and has left a horrible scar in our hearts. I had never heard of CMV before and am so upset that I was not even aware of it and the precaution advice was not passed on to me when I found out I was pregnant by the health professionals. I only found them online after searching specifically for CMV. I don’t understand why the information is not at the forefront of NHS guidelines, such as drinking and smoking. I was washing my hands and keeping clean, but were not aware of the risks of being around small children. My heart is broken and I hope this never happens to anyone again.