Jonnys marathon for CMV

At our 20 week scan my son had echogenic bowel and was tested for CMV ( cytomegalovirus) . We found out I had the virus and it lies dormant in my body but was told I wld not pass this onto my baby!

Our son Jonah was born in April 21 with CMV after blood and urine test where positive.

At 5 days old Jonah met with his now consultant who told us in great detail what CMV is and what the furtune may hold for Jonah. Basically worst case children are Bron brain dead.

At 8 days old Jonah Jonah spent 2 weeks in the Royal Children's Hospital with Group Strep B Septis. (Another bacterial infection)

While Jonah was already in hospital he had to under go tests such as MRI for his brain, hearing and sight tests, depending on these results, his consultant would then decide what medican he would then start.

After all the tests we found out Jonah has a bit of loss of hearing in his right ear (moderate to severe) due to CMV getting into the nerve and damaging it, little damage to his brain and his sight was all clear. He was started on an antivirus drug called valganciclovir. , Which he was on for 6 months and closely monitored. This is a toxic medicine which is taken twice a day and must be started within the first 28 days of life for the best chance of controling the CMV virus. Although there is no guarantee this will save his hearing or brain damage!

Jonah started his medication on day 11, he done very well in taking the medication and completed the whole 6 months of treatment. He met with his consultant every 4 weeks to get blood taken to monitor his blood cells, platelets and the level of infection. The medication will not cure his hearing we just hope it doesn't progress any worse.

9 months on and Jonah's Consultants are very happy with the progress he is making, meeting all his milestones although the loss of hearing in his right ear has got a little worse, his left ear is still perfect and we are wanting to protect that ear as much as we can. The infectious disease consultants at the RVH have been brilliant!

Basically we want to make pregnant women and newborns awear of this virus! 2 to 3 babies are damaged by the CMV virus every day in the UK.

CMV is more common than downs syndrome, spina bifida or toxoplasmosis.

We are raising money for the CMVaction charity, £700 pays for one month’s coverage of CMV literature in health care surgeries across the UK.

CMVaction is not a government funded charity, it coast £20,000 to cover cost for one year.

https://cmvaction.org.uk/

What is CMV ?

It is common virus that is harmless to most but can be dangerous to unborn babies. About one third of women who become infected with CMV will pass it onto their unborn baby. Symptoms can be mistaken for a cold /flu and adults will not even realise they have it.

About 1 on every 5 children born with this virus will develop permanent problems due to the infection, nearly 1000 babies a year. 5 out of 1000 babies born with CMV will die at birth or in their first year of life! It can also cause still Births or miscarriage.

CMV is responsible for around 25% of childhood hearning loss.

CMV can cause hearing loss, physical & motor impairment, seizures, autism, learning difficulties, visual impairment, cerebral palsy and epilepsy.

How it's passed on?

The spread of bodily fluids by small children is the main cause of pregnant women catching CMV. So women who work in childcare or who have a family already need to be especially careful during pregnancy...

Avoid putting things in your mouth that have been in a child's mouth. Try not to share food, cups or cutlery with your child or even put their dummie on your mouth! Avoid kissing on the mouth.

Wash with care!

Clean your hands after touching urine or saliva.l, also when feeding or whipping a child's mouth or nose.

CMV was discovered in the 50s and there is still no vaccine . It was discovered by the same research team that discovered the mumps, rubella and polio. Can we get a vaccine before cmv reaches 65 years without one.?

1000 babies are missed from being diagnosed with CMV a year, which then loose out on starting the antivirus drug to help save the hearing or whatever the virus has damaged .

Thank you. Jonah & family