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Diagnosis as a babyOur Stories


By December 22, 2021June 22nd, 2022No Comments

December 2013

This is our Evalyn Rose, she was a long awaited baby.  My husband and I were told we could not have any more children due to fertility issues, we tried a round of fertility treatment which failed so decided to give up, time went on and we moved county, houses and jobs and it was then I found out I was pregnant! … shocked!

The pregnancy went well, I was very tired and scans to me were not normal, her head was always 2 weeks smaller than the rest of her body but was told it was in normal range.

Evalyn was born on 23rd Dec 2013 with a very quick 32 minute labour! she seemed healthy, healthy weight and passed her hearing test so we were sent home.

During Evalyn’s new baby check they noticed she had very small fontanelle and told we were being referred …. only it being Christmas it did not happen! I chased it up several times and finally at our 8 week check I asked again for a referral and mentioned she screams 24/7.

We were seen at our local hospital, admitted and after many weeks of battling to be heard, she was diagnosed with severe reflux, mainly due to her failure to thrive, bottle aversion and constant crying and it was then they mentioned her small head, we were just about to be discharged when they consultant heard her screams, all of a sudden we have been referred for head MRI, Ultrasounds, blood tests, etc.

Fast forward to several weeks later, the results showed she had cCMV.

I am a health care worker and screen my transplant and chemo patients for CMV but not once was it ever mentioned to me about catching it during pregnancy.  I also dip dozens of urine samples a day and I can’t help but feel if I had been told about CMV during pregnancy I would have been a lot more aware when around my patients and dipping their urine.

I do feel let down by the system if I am honest and due to the length of time it took to diagnose Evalyn the option of antiviral was taken away from us.

So far, diagnosis wise, we have Microcephaly, Spastic Cerebral Palsy, polymicrogyria, Hypertonia, GORD, Cows milk protein intolerance and Lactose intolerance.

She amazes us every single day and could not imagine life without her. We also have son who is 9 and had Aspergers and ADHD unrelated to CMV as far as I am aware.