Seb was born December 2019 with congenital CMV. Having contracted CMV at 8 weeks pregnant and being told that transmission across the placenta in the first trimester has much more significant outcomes for baby, the next 32 weeks of pregnancy became a very long and worrying time. I feel very lucky to have given birth to a healthy, asymptomatic baby boy. I worry about him every single day and know that we are not out of the woods from a hearing and developmental point of view, but he’s a fighter and beating the odds so far! I hope our story can bring some hope to those that are faced with an early diagnosis of maternal infection and a long pregnancy road ahead as we had.
I was told I had a primary CMV infection at 8 weeks pregnant, I wasn’t ill with it and didn’t know I had it. It was found somewhat coincidentally during an admission for hyperemesis which I suffered badly with during both my pregnancies. We had our 12 week dating scan as normal and then from 16 weeks was referred for regular scans with a fetal medicine consultant. Our scans at 12, 16 and 20 weeks were normal. We decided not to have an amniocentesis - although the risks associated with the procedure are small, we felt it unnecessary given that the scans were normal so wouldn’t do anything differently to what we were already doing. At 24 weeks things took a turn with Seb showing a bit of echogenic bowel (bright bowel) on his scan. At that point we did then have an amniocentesis, which confirmed that it had transmitted across the placenta. I had been clinging on to the hope that it might not have transmitted across so that result was hard to come to terms with. Two major things then happened: we went for a fetal MRI which was a daunting procedure but reassuringly showed that all looked normal, particularly brain development; and secondly I was started on valaciclovir treatment in a bid to reduce the viral load and give Seb the best chance of being born asymptomatic, particularly to try and protect his hearing. 16 tablets a day was a lot to take but at least I felt like I was doing something useful for my baby rather than just waiting. From then on we had 2 weekly scans for the remainder of pregnancy, the echogenic bowel fluctuated slightly but never got any worse. We had another worry at around 35 weeks when Seb dropped off his growth curve slightly, and we were told they might induce us early. But he picked up his game by the next scan and I was allowed to carry him to term. I was induced the day before my due date purely from a planning perspective so that he would be born at the beginning of the working week to then allow us to get all the necessary tests done as soon as possible after birth.
Seb was born asymptomatic, congenital cmv was confirmed with a urine test but all of his other tests were normal: cranial ultrasound scan; ophthalmology review; blood results (importantly platelets); liver and kidney function. Most reassuring of all was a normal result from the extended hearing test and his viral load reading was as low as the machine could measure. I felt like we’d dodged a bullet.
We’ve had follow up appointments with the neonatal team and physios and will soon be going for a repeat hearing test.
We’ll never know whether taking valaciclovir determined any of Seb’s outcomes, further research is needed in that area. A very long, worrying and stressful pregnancy, but we now have our beautiful smiley baby boy who is thriving and meeting all of his milestones, I just keep my fingers crossed that he continues onwards and upwards.