Background and aims In the UK, an estimated 3–4 per 1000 infants are born with congenital cytomegalovirus (CMV) infection; 10–15% of affected infants present with CMV-related symptoms, 40–58% of whom develop long-term sequelae. The aim of this study was to explore presentation and management of clinically-recognised congenital CMV in the UK and Ireland, and ascertain outcome in early childhood.
Methods Active population-based surveillance of infants born in 2001–2002 with confirmed or suspected congenital CMV was carried out through the British Paediatric Surveillance Unit. Clinicians completed questionnaires on presentation, diagnosis, management and subsequent outcome. Infants with laboratory evidence of congenital CMV in the first 3 weeks of life were classified as confirmed cases.
Results 86 confirmed and 70 possible cases of congenital CMV infection were reported. Over a third (27/72) of singleton infants with confirmed and 44% (27/61) with possible congenital infection were preterm (<37 weeks gestation). Among confirmed cases, 75% (64/85) presented with neonatal manifestations compatible with congenital CMV (ie, hepatomegaly, splenomegaly, petechiae, thrombocytopenia, chorioretinitis, seizures, intracranial calcification, and/or microcephaly). Half of symptomatic infants (34/64) had neurological signs; 17 infants were treated with intravenous gancyclovir. Among 78 confirmed cases with information on outcome, 31% (24/78) were developing normally, 18% (14/78) had mild, 24% (19/78) moderate and 14% (11/78) severe sequelae, and 13% (10/78) had died. Median age at follow-up for surviving children was 18 months (IQR 15, 22 months). Children with neonatal CMV manifestations were significantly more likely than those without to have moderate or severe outcomes (including death) (60%, 36/60, vs 22%, 4/18, p=0.001). 27% of survivors (17/63) had bilateral hearing loss.
Conclusions The number of confirmed cases of diagnosed congenital CMV reported in this study was lower than expected, highlighting the need for early and appropriate investigations when congenital infection is suspected. Due to the unexpectedly high proportion of preterm infants, resulting from differential case ascertainment, it was difficult to distinguish prematurity- and CMV-related symptoms.
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