We found out in January 2017 just after Gabe’s first birthday that he had Congenital CMV. I had a great pregnancy and a delivery with no problems. However he was born with tiny purple spots on his face and we were kept in overnight for observation – although no mention that it could be CMV.
As the weeks went by Gabe started to smile and giggle but he was not hitting the physical milestones for his age (rolling over, sitting and later crawling). He also struggled to support his head. Feeding was difficult and weaning was a very stressful time as Gabe had difficulty swallowing. During the usual baby weigh in’s the Health Visitor picked up on how Gabe’s head was small in relation to his length and weight. Funnily enough the sonographer at a late scan had mentioned his head was on the smaller side – little did we know how significant that was!
We went to the GP who referred us to a Paediatric Consultant who referred us for an MRI when Gabe was just over a year old and multiple blood tests. Along with looking back at Gabe’s heel prick test the Consultant gave us the diagnosis of Congenital CMV. It was a tough time. I couldn’t talk about it without crying and the guilt I felt was enormous. I had passed this onto him. I was meant to be his protector for goodness sake but I was helpless – I had never even heard of CMV!
He has Cerebral Palsy and Development delay, his hearing is good so far but we are regularly tested in case anything changes. There has been a lot of improvement but we have a long way to go. We have a hospital appointment pretty much every week, whether it be physio, speech and language therapy, orthotics, audiology or the paediatrician. He has a walking frame, a standing frame to strengthen his hips and core muscles, a walking frame which he has only taken a couple of steps in. Gabe also has a hand splint, supportive boots, a special chair and glasses for his squint.
Gabe is now 2yrs and 2 months old. He can just about sit up but finds it difficult. He cannot walk and has a weakness in his left side. He doesn’t use his left hand as much as he could but this is improving through lots of physio we are making some progress.
I just wish that there was more awareness of CMV. It’s no one’s fault that this has happened but forewarned is forearmed and their were indicators early on but no one picked up on them – the small head at a late scan and the purple spots on his face straight after he was born. These are both classic signs of Congenital CMV. Gabe’s impairments cost the NHS a lot of money through his therapies and the equipment that he needs. The economic impact on the NHS from Congenial CMV in my opinion is huge and therefore there must be more awareness about CMV and how it can be prevented.
Despite all the difficulties Gabe has and will face in the future he is our curly blonde world wind who gets around like a speedy caterpillar. He has a smile for everyone and very infectious (bordering on dirty) laugh. Tractors and cars are an obsession for him as well as numbers & singing. He loves his big brother Ned and they love nothing more than hiding under blankets together giggling away. Ned looks after him and cheers him up when he is feeling frustrated and thinks he is the cutest brother in the world! Gabe is bright star who will always twinkle no matter what he faces.