CMV: What support
to expect
Sept 2012
Evidence-based guidelines for
managing congenital CMV in the UK
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Introduction
The first set of evidence-based UK guidelines for the detection and
treatment of congenital CMV were published in 2011 (Kadambari et al,
Early Hum Dev. 2011 Nov;87(11):723-8. Epub 2011 Sep 29).
This document sets out the key points from the guidelines, checked by medical experts (Dr
Sue Luck and Dr Paul Griffiths). This is so families know what to expect and what to ask for.
These are broad guidelines about what tests and monitoring to expect. Research
into best treatment for congenital CMV is an emerging area and not all studies are
conclusive. The availability of some tests will also be different across local areas.
Nevertheless, we hope this summary of the guideline will help families
to understand what tests their child will have and why.
Making the diagnosis – what doctors will look for
Some children will have very obvious signs of CMV infection. These can include:
Lots of very small (1-2mm) red or purple spots (called petichae)
Larger (2-8mm) red or purple dome shaped spots (called blueberry muffin rash)
Low birth weight, indicating poor growth during pregnancy
A head significantly smaller than other babies (microcephaly)
Enlarged liver and spleen (hepatosplenomegaly)
Yellow skin (jaundice)
Making the diagnosis – what doctors will test for
These symptoms are not unique to CMV. A saliva, urine or blood test taken within
the first 3 weeks of life can confirm that a baby was born with CMV. So in order
to confirm a diagnosis, doctors should carry out the following tests:
What may be
tested?
Saliva
swab
Why?
How may this vary locally?
This is the quickest and easiest way to test whether
the CMV virus is present in a newborn baby and is
very reliable when used as a screening test in large
populations.
Saliva testing is not
available in all areas
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What may be
tested?
Why?
How may this vary locally?
Urine
sample
A urine sample from a baby in the first 3 weeks
of life is the most accurate form of diagnosis. It
will usually be taken at some stage even if
saliva testing has already been carried out.
Collecting urine samples
from babies is not easy. Not
all clinics have the special
bags and pads and time to
do this when you have an
appointment with the doctor.
Blood test
A saliva or urine test can confirm whether the CMV
virus is present. However, blood tests can also be
useful in determining whether there is active disease.
Put together with other findings it may help give some
idea of a baby’s risk of having future problems.
Should be widely available
Dried
blood
spot test
(Guthrie
card)
Every baby in the UK has a small blood sample taken
when they are a few days old. This blood sample
is called a Guthrie card. Some symptoms of CMV
infection such as hearing loss will only develop as a
child gets older. For any child older than 3 weeks, a
saliva or urine test won’t tell whether any CMV they
have now was there when they were born. Going
back to the Guthrie card can sometimes confirm
this. If it is positive it is likely that a baby has
congenital CMV. However if this test is negative then
it does not rule out CMV infection before birth.
Local policies vary
on how easy it is to
retrieve Guthrie cards.
Further tests once CMV is confirmed
What should be tested?
Why?
Blood count,
platelet count & liver
function tests
CMV can cause a reduction in the number of red and white
blood cells and inflammation of the liver (hepatitis)
Brain scan
CMV can cause some distinctive changes to the brain. A brain scan
can help doctors to diagnose CMV. In some cases it can help doctors
to identify children who may be at most risk of problems in the future.
This isn’t always easy though. The doctor will decide on the most
appropriate kind of scan (ultrasound, CT or MRI) and discuss the results.
Eye test
This is to check for any inflammation or scarring on the retina
(the light sensitive layer of tissue in the back of the eye)
Hearing test
Hearing loss is one of the most common symptoms of CMV
This test will be more detailed than the hearing
screen carried out on all babies at birth.
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Treatment for CMV
Antiviral drugs, such as Ganciclovir and Valganciclovir, can be used to treat newborns
with serious symptoms. All options should be carefully discussed with a doctor,
and individualised to a baby’s needs. Current studies only show a benefit in treating
babies whose brain has been affected (which may include sensorineural hearing
loss), if they are in the first month of life. However, clinicians may consider treatment
in other circumstances, particularly if a baby is very unwell. The main benefit is
to reduce the severity of the hearing loss associated with CMV infection.
If treatment is started then a baby will need to be closely monitored to check for risks and side
effects. The most common side effect is a decrease in the blood count and white blood cells
(infection fighting cells). In some instances kidney and liver function can also be affected by
these drugs. Close monitoring of white blood cell counts, platelet count, kidney and liver function
is therefore necessary during the course of treatment. These should be monitored weekly
and if any of these tests suggest a problem then treatment may be stopped or decreased. A
drug can also be given which helps to improve the number of white blood cells. Blood, urine
and saliva tests may also be taken weekly during treatment to follow CMV virus levels.
Long-term follow up
All children born with CMV should have their growth and development regularly monitored.
All children born with CMV should have a hearing assessment every 3-6
months until age 3 and then yearly until 6 years old. This is particularly important
as hearing loss is often progressive and may get worse over time.
All children born with CMV should have a clinical assessment by a paediatrician
at around 1 year old to check that their development is as expected.
Those children more severely affected should have an additional paediatric
assessment at 6 months and neurodevelopmental assessment at 1 year.
Children born with symptoms of CMV should have an annual eye test until the age of 5
Unless your doctor has advised you otherwise, children with congenital CMV infection
should receive the routine immunisations recommended for all children.
For more information and support visit
www.cmvaction.org.uk or call us on 0845 467 9590
Contact us on 0845 467 9590
@ Email us [email protected]