Story by mum Casey Ashton about her daughter Rennie who was born in March 2019.
Our story started on my 20 week scan, there was no amniotic fluid which suggested my waters had broke, which they hadn’t. I was told my baby may be missing organs & would find out 4 days later if I could continue with my pregnancy or not. When that time came the baby did have all organs but the heart was enlarged with fluid around & the bowel was showing brightly, which suggested downs syndrome. I refused the invasion test as it could cause a miscarriage. Every 2 weeks I had a scan, at this point I wanted to know the sex of my child rather than wait because I was told the baby might not make it. But the baby wasn’t moving & we couldn’t find out. As the weeks went on things were looking up, I was induced at 37 weeks as my baby was at high risk of still birth because the baby was small. I had a healthy 4lb 7oz baby girl, Reenie. We thought everything was fine until her development delays. She was referred for an MRI on her spine & brain, which showed severe damage to her brain consistent with CMV this was at 18 months old, which then was too late for treatment. Doctors went back to Reenie’s 1st blood spot test (at birth) to confirm the infection. If this had been done then (at birth) things could be a lot different. She could have been offered anti viral treatment to lesson the effects of the infection, the anti viral must be given within the first 4 weeks of the babies life. She now has to have regular hearing & eye tests as the effects of CMV can show over time, she may also suffer from other things in future such as cerebral palsy, epilepsy, autism, the list is endless. She has severe developmental delay, is non verbal and can not stand or walk, she is 3 in March. Although I would never change anything about Reenie it has been the most difficult thing to have to go through, we want everyone to know this infection and understand how severe it is!!!
She is such a funny bubbly and caring little girl and continues to improve day by day
