Cytomegalovirus – what you should know

Cytomegalovirus – what you should know
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CMV baby In July 2012 our lives took a different turn. My son and daughter-in-law were expecting their first child and I was looking forward to having a new baby granddaughter.  Nothing could have prepared us for what was to come.

It was a straightforward pregnancy and birth. She was born at term at Crowborough Birthing Centre but it was immediately apparent she was very ill and was transferred to Tunbridge Wells. Her little body was covered in petechiae (red blood spots) she had an enlarged liver and spleen, low platelets, low birth weight, seizures, jaundice, microcephaly…….. and more.  She was diagnosed with congenital Cytomegalovirus (CMV), a common virus, harmless to most people, but devastating to a developing baby.  In the coming weeks, we had to come to terms with the knowledge that she is severely mentally and physically disabled, blind and medically fragile.

I knew a bit about CMV, I was a Teacher of the Deaf and had worked with a severely disabled child for nearly two years.  What struck and horrified me was how little the professionals knew about CMV and its devastating consequences.  In the neonatal unit, none of the doctors or nurses had ever seen it.  The GP had to look it up.  Midwives, health visitors, sonographers, audiologists, friends, family, people in the street – had never heard of it.

Congenital CMV is the most common birth disorder in the UK.  Around 1 in 150 babies in the UK are born with the virus and around 1 in 5 of these children – 900 every year – will develop serious, permanent problems such as deafness, blindness, cerebral palsy, mental and physical disabilities and seizures.  As CMV is a relatively unknown condition, it is a common misconception that it is rare. In fact, it is more common than Down’s syndrome, Toxoplasmosis, Spina Bifida or Cystic Fibrosis.

About 60% of the population has been infected with the virus at some time, with symptoms no more severe than the common cold.  It is easily transmitted through close contact with bodily fluids such as urine, saliva or blood.  It is only dangerous to those with a weak immune system or when passed from the mother to her unborn baby.  It is tested for in pregnancy in the USA and Europe but not in the UK – other than for those undergoing IVF treatment.  There is no cure, no vaccine.

Anti-viral drugs such as Ganciclovir and Valganciclovir can be used to treat newborns with severe symptoms.  Research indicates that, if given in the first month of life, it may help the baby retain some hearing or slow the progression of the hearing loss.  It cannot repair the damage already done.  However, the drug is very toxic as it weakens the immune system, attacking the white blood cells that fight infection and causing damage to the kidney and liver.  It is not a simple solution.

It is the leading cause of non-hereditary Sensori Neural Hearing Loss (SNHL) in children. CMV infection can only be confirmed in babies in the first few weeks and that has made it difficult to estimate the proportion of SNHL that is attributable to CMV.  Studies define SNHL in children differently so this also complicates the estimation of the full magnitude of the effect of CMV on the incidence of hearing disabilities.  It is generally estimated that about 25% of hearing loss in children by 4 years of age is likely to be a CMV-related hearing loss. Some research has this as high as 60%.

Universal Neonatal Screening alone is unlikely to identify the majority of cases of CMV-associated SNHL due to the large proportion of affected children who have hearing loss that has its onset in later childhood or progressively increases over time. Deafness caused by CMV is sensori neural and may affect one or both ears.  In half of the children, their hearing will get worse over time.  The virus may cause unilateral deafness, particularly in asymptomatic children, but these children can go on to develop deafness in the other ear.  Sometimes the hearing will fluctuate.  Research is underway to try to understand how CMV affects hearing and how this damage may be prevented.  The progressive nature of SNHL suggests that there is a chronic infection in the central nervous system that continues to be active through early childhood.

Many children who appear to ‘only’ have a hearing loss as a result of CMV infection often have additional difficulties.  Their sensory integration system may be damaged affecting balance (vestibular) and they may have little sense of individual joint position and movement (proprioception).  They may have hyperactivity, sensitivity to sound and vision, sleep problems, behaviour issues, dyspraxia, poor muscle tone, autistic tendencies, high pain threshold or no sense of fear.

CMV is complicated and no two children are affected in exactly the same way.

CMV granddaughter

My granddaughter continues to fight all that life has thrown at her. Yes, she has cerebral palsy, epilepsy, chronic liver disease, is blind, has scoliosis of the spine and is vulnerable to infection. Most children are not so severely affected, she was unlucky. But she is a happy bunny, we have found what makes her smile and even chuckle – she is an absolute delight and we love her to bits.

So …. What can we do?

Raise awareness

The US government agency, the CDC (Centre for Disease Control), published statistics on women’s awareness of conditions affecting children versus the actual occurrence of those conditions. This demonstrates that the condition with the highest incidence (CMV) had the lowest awareness rating!

ConditionWomen’s AwarenessIncidence per year in the US
Fetal Alcohol Syndrome97%5000
Down’s syndrome 83%4000
Spina Bifida 79%3000
HIV/Aids 98%200

There are no similar statistics for the UK but it is likely that they are similar or worse.

Learn about prevention and take simple hygiene precautions

As a child carrying CMV infection may show no symptoms, pregnant women should

  • Avoid sharing cutlery, drinks or food
  • Avoid kissing babies, toddlers, and small children directly on the mouth
  • Wash hands regularly, especially after changing nappies and coming in contact with bodily fluids

CMV Action UK CMV Action – CMV Action is a UK charity that has been set up to raise awareness of the virus, campaign for better prevention measures within the health service and encourage research into a CMV vaccine.  It offers advice and support to anyone affected by Congenital CMV and helps ensure they receive the best care possible. It puts families in touch with each other and provides a personal support service for each of its members.  It also offers information and resources for professionals. www.cmvaction.org.uk

Follow CMV Action on Facebook and Twitter

Or email me at janpearman@cmvaction.org.uk

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Cytomegalovirus Pinterest - motherhooddiaries

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Jan Pearman (1 Posts)