Darcie

     

Hi everyone, meet chocolate faced Darcie. She is my beautiful 20 month old daughter. I was diagnosed CMV positive when I was 6 months pregnant. It is thought that I caught it when I was 4 months pregnant. I was so unwell & nobody could work out what was wrong with me. 
After blood tests, it was confirmed that I contracted CMV whilst I was pregnant and after an amniocentesis, it was confirmed that it was present in my womb and likely that my baby had caught the virus too. 
From my diagnosis until she was born, I was scanned fortnightly by a consultant and I was admitted to hospital every 4 weeks to have an immunoglobulin infusion. This is a treatment that has not been signed off in the UK, it's a medical trial that ran in Italy. I was told that it wouldn't cure any damage that had already been caused but it could, however, prevent any symptoms from getting worse but it wouldn't cause any harm so I opted to go for it.
My prenatal care was amazing. I was like royalty in the hospital as the treatment I was getting is so rare, I was only the 2nd person in Scotland to have this (so I was told). 
My gorgeous girl was born on 23/4/2014 and her urine and blood were tested straight away. We were in a single room alone and scared. The test results showed that she was CMV positive and she was taken for a lumbar puncture at 1 day old. 
Thankfully the results came back negative in her brain fluid so we have been told it is unlikely that she will have any brain damage. She passed her hearing test & is tested by audiology every 6 months to make sure her hearing does not deteriorate.
She has thrived into the most amazing little girl & fortunately does not seem to have any symptoms from the virus other than being slightly smaller than 'normal' and having some urine/kidney issues but they don't think that's CMV related. 
I thought that this virus was so rare and unheard of - nobody else I knew had ever heard of it - even a lot of midwives & health care professionals that I speak with. 
My friend has just found out she is pregnant with her first child & she asked to be tested to see if she has CMV & she explained my situation & she was told it was unnecessary to test her & they refused. My friend demanded to speak with a consultant and they have reluctantly tested her - this makes me so furious as it shouldn't have to be something that people fight for. 
Reading the stories on this page and other CMV awareness/action groups makes me realise just how common it is & how dangerous it can be. We have been so lucky to have such an such an amazing little girl who is mostly healthy.

     

Our Stories

Everything had been going fine with my pregnancy until the 18-week scan. Then I was told I had my dates wrong and they put me back by 5 weeks, originally it was August 15th, now it was... Read more
It was my first pregnancy and it was all rather exciting, choosing names, all the tiny little clothes, and we’d been so looking forward to having the 20-week scan, desperate to get a... Read more

Latest Events

Registered charity no: 1171773