Treatment for babies and children affected by congenital CMV will depend on many factors, including whether they have symptoms at birth, how serious these symptoms are, and when diagnosis is made.
This section sets out the treatment currently available for babies diagnosed in the first few weeks of life, including the benefits and risks of this treatment.
Is there a treatment for congenital CMV?
Anti-viral drugs, such as ganciclovir and valganciclovir, can be used to treat babies with symptoms of congenital CMV. Ganciclovir is given intravenously (into a vein through a ‘drip’) and would be the drug used for babies who are not able to take all of their feeds by mouth, for example, in premature babies. Valganciclovir can be given by mouth and would be used for babies who are feeding normally. Treatment options should be carefully discussed with your baby’s doctor and individualised to your baby’s needs.
When should anti-viral treatment be used?
Anti-viral treatment is recommended for babies if CMV infection has affected the central nervous system, including their hearing, or a significant effect on other organs. Treatment should be started before four weeks of age. The goal of anti-viral treatment is to reduce the amount of active virus so that the baby is able to control the infection with his or her own immune system.
Should asymptomatic babies be treated?
Most babies born with congenital CMV are asymptomatic and do not have any symptoms at birth. However, by the age of five, up to 15% may go on to develop hearing loss. This usually only affects one ear, but may involve both ears.
Anti-viral treatment for asymptomatic newborns is not recommended because it is not possible to accurately predict which children will go on to develop hearing loss. There is currently no evidence that anti-viral treatment is of benefit for children who develop hearing loss later in childhood. However, a study is currently being carried out to understand more about this.
What are the benefits of antiviral treatment?
Anti-viral treatment may help to prevent hearing loss or stop hearing loss getting worse and improve the development of communication. These benefits have been observed in two year olds whose central nervous system (brain and spinal cord) had already been affected by CMV when they were diagnosed. In a recent research study, a small positive benefit was seen in babies who received six months of valganciclovir treatment compared to six weeks of treatment.
What are the risks of antiviral treatment?
The most common side effect of anti-viral treatment is a decrease in the number of white blood cells that help fight infection. Around one in five babies will experience this side effect, most commonly in the first few weeks after starting anti-viral treatment. Less commonly, anti-viral treatment may cause a reduction in the number of platelets in the blood (the cells that help the blood clot). The liver can also be affected in some cases. Blood tests are required to closely monitor the blood cells and function of the liver. If these side-effects do happen, then anti-viral medication may have to be stopped for a while.
The decision to start anti-viral treatment is not straightforward. The potential benefits of treatment need to be considered alongside the potential side effects of treatment. It is important that you have the opportunity to discuss the options for anti-viral treatment and length of treatment with a doctor who has experience in treating babies with congenital CMV, such as a paediatric infectious diseases specialist.