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Diagnosis as a babyOur Stories


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

January 1999

On the 20th January 1999 our lives changed forever. Our second daughter Chloe was born after a very difficult pregnancy and poor intrauterine growth.

She was imediately taken to the SCBU. She was a poor feeder, could not control her body temperature, had a large liver and black spots and jaundice. All were put down to prematurity, but I had a real sense that something was not right with her, she seemed ” flat” and non-responsive, compared to smaller earlier babies.

One thing we noticed was that she jumped like a frog ( which we now know were seizures) , they were due to do an ultrasound on her brain but  the machine was broken. Chloe also failed her new born hearing test. Despite all of this we were discharged when Chloe was a month old, still on tube feeds.




With in a couple of days being at home We were bathing Chloe and she had a HUGE prolonged tonic clonic seizure, after being rushed back into a different hospital who then started a long round of brain scans, biopsys, and tests. They eventually had a meeting with us and told us that Chloe had congenital CMV and also her brain’s mylen was white not grey so a type of leukodystropy  Her brain scan also showed up calcifications, enlarged ventricals and cysts.

They traced my bloods back in pregnancy to find that I probably had CMV around 12 weeks gestation.

My husband and I were in total shock, I remember just looking at her, she was so perfect, with huge blue eyes, how could anything be wrong???

Her first few years were a difficult time, spending the magority of them in various hospitals, she had constant seizures, infections and could not absorb anything in her bowel which led to her being fed via a tube into her heart, which is extramly dangerous and caused her to have septicemia .

It all seems an age ago now!

Chloe is now 16, she still has a huge list of diagnosis’ which include Autism, ataxia, severe learning difficulties, hearing and vision impaired, fed some oral but still on an over night feeding pump due to unstable blood sugars, bowel issues and epilepsy, but she has overcome a lot!

She is determined, funny, strong willed cheeky monkey. She has given us the skills to adopt and foster many children with additional needs. Some days I hate CMV and other days in glad if the journey it has taken us on and how it’s changed us.