Congenital CMV – “Why didn’t anybody tell me?”

When Sarah and Rob were told their two-day-old baby failed his new-born hearing test, their world changed. The anticipation of taking their baby home was replaced by the frightening and utterly unintelligible world of medical terminology, appointments, MRI scans, hearing assessments and blood tests. Sarah’s pregnancy had been healthy, but she had unknowingly contracted cytomegalovirus (CMV), which caused her baby to be born with congenital CMV (cCMV).

25/06/2025

The couple learned their baby had profound hearing loss, vision impairment, and brain changes which may lead to learning and developmental difficulties, the severity of which were hard to predict. Their hopes for their baby were shattered as they faced the reality of his complex needs. Sarah and Rob had never heard of CMV and questioned why they weren’t informed about its risks.

cCMV is the most common infection passed from mother to baby, affecting up to 1 in 200 pregnancies in the UK, yet awareness is low. Unlike other infections like listeriosis and toxoplasmosis, CMV is rarely discussed with expectant parents, though it’s more common than Down syndrome or spina bifida. Midwives could help by advising on ways to reduce the risk, such as handwashing and avoiding contact with small children’s saliva and urine.

Sarah and Rob’s baby began antiviral treatment with Valganciclovir, and his progress will be closely monitored. Early treatment can reduce hearing loss and improve developmental outcomes. Studies have shown that maternal antiviral treatment during pregnancy can reduce transmission to the baby by 70%.

Currently, there’s no routine screening for CMV in the UK, though it’s available in other countries. The UK National Screening Committee is reviewing the evidence on CMV screening. 

The introduction of screening would transform care for families like Sarah and Rob.

Antenatal screening can prevent cCMV, and postnatal CMV screening would increase case diagnosis, allow early treatment initiation and ultimately improve clinical outcomes for these children.

*Fictitious names

Written by Sara Barnett, Research Midwife