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Diagnosis in pregnancyOur Stories

Amy & William

By December 3, 2021June 22nd, 2022No Comments
Amy and William

Amy’s second baby, William, died from an infection of CMV. Amy talks about the personal cost of CMV and the impact it has had on her family. 

“Our baby was due on Christmas Day. We were so excited. I’d previously had a successful pregnancy with our first son Dylan and had no reason to think this would be anything different. Our optimism ended at the 20-week anomaly scan when we found out something was wrong. The first inkling we had was when the sonographer said she couldn’t see what she needed to see and asked us to go for a walk. We returned but she still couldn’t see what she needed to, so asked us to sit and wait for the consultant obstetrician. 

“After a long and worrying wait we saw the consultant. After the scan she told us it looked like our baby had something genetic or chromosomally wrong. She suggested we got a second opinion at an emergency appointment the next day. We returned to the hospital on Friday but there was no one available to see us so we went to another hospital. There they told us it was not a chromosome problem but a viral one that has caused our baby to become severely anaemic. They suggested it was either Parvovirus B19 or CMV.

“A foetal blood transfusion can help in infections of slapped cheek so we went for an emergency blood transfusion that evening. The transfusion was a success and we left knowing our baby’s heart was still beating. When we got home the first thing we did was research CMV. I came across CMV Action called the helpline who put me in touch with a trustee who had lost their baby to CMV. 

“We spent the weekend keeping busy with our then two-year-old son Dylan. I can only describe that time like watching a movie, it felt like it was happening to someone else. On Monday the community midwife came to listen to our baby’s heartbeat. She couldn’t find it and asked us to go to hospital to see the consultant. That Monday afternoon we found out William’s heart had stopped beating. The conversation then turned to how I was going to give birth. 

“I took some medicine to induce labour and delivered William on Thursday. By Friday we were home. I look back now on what was seven days of craziness. Two days later the results from the blood transfusion showed William’s viral load was very high, almost four times above the level needed for CMV to be detected. 

“We had my pregnancy booking bloods analysed to find out when I caught CMV. The results showed that at eight weeks I caught CMV for the first time. I remember having a little bit of a cold, but nothing really notable. 

“I had heard of Parvovirus (slapped cheek), been warned about toxoplasmosis and listeria but had never heard of CMV. I feel so frustrated because I had read extensively on how to have a successful pregnancy. I was careful when gardening or changing the cat’s litter trays. I avoided any food or drink that could be potentially damaging but sadly I had no idea about preventative measures I could take to stop catching CMV. 

“I know from CMV Action the preventive measures to avoid catching CMV so I adopted them into my everyday life before I got pregnant. It was actually really easy. Then, I found out I was pregnant a year to the day William’s heart stopped beating – that was very emotional. 

“I felt anxious throughout my pregnancy. I wasn’t considered high risk, but because of my previous experience I was offered additional reassurance scans and was under consultant led care. I was especially anxious when I got to the 20-week scan. I was lucky all the midwives were very aware of what had happened to me, and they were also aware of CMV. The support I received from the bereavement midwife continued well into my pregnancy with Sophie. 

“I am determined to use our experience to help others. And I am especially determined to raise awareness of CMV to stop it causing damage to more babies.”