Laura: CMV Changed Our Lives
I knew from the moment our daughter, our second child, was born that there was something different. From the moment she was born she was restless, never slept, hated the car, screamed constantly and hated being put down. Feeding was a huge issue and she was never comfortable. We spent the first 3 months back and forth to the GP, A&E and eventually a paediatric consultant. She was diagnosed with reflux and prescribed all sorts of different medications to try and ease it.
Nothing worked. She didn’t reach her milestones– was late to sit, smile, didn’t crawl or show signs of moving, wasn’t babbling. She also had neurological type hand movements which, by 9 months, combined with her weight loss and lack of feeding led to her being hospitalised 2 weeks before Christmas to the Evelina Hospital Neurological ward. She was discharged with no diagnosis. Everyone put her behaviour down to allergies, so we adopted a strict exclusion diet.
She still wasn’t meeting her milestones and we pushed for greater help.
Could it be CMV?
It wasn’t until 3.5 years when we were referred to SALT for help with her speech that they sent us for a hearing test. Over the course of 3 months she lost her hearing completely on one side. It was only through us Googling this sudden loss that we came across the idea of CMV and asked the audiologist if we could test the heel prick. She said it would be unlikely to be CMV, but the heel prick revealed that she did have CMV. It was like all the stars finally fell into alignment- having a diagnosis meant we could piece together everything that had happened over the first 4 years of her life. It was too late to actively treat her with antivirals but finally we had an explanation for: hearing loss, speech delay, motor delay, acute vestibular disorder, eating and gut issues, behaviours and mannerisms.
A difficult journey!
The main challenge for us was not being listened to; we pushed and pushed and pushed. I knew there was something causing all her issues. It wasn’t just allergies or delay.
No-one who we were under the care of ever suggested CMV
Even after we had the diagnosis and returned to see the consultants, many had also never heard of it and the impact it could cause. The lack of information, awareness and support has been very challenging.
Overwhelmed with emotions
To say CMV changed our lives would be an understatement– we already had a child and when our daughter was born our whole world turned upside down. She needed constant care; she never slept and rarely settled, so we were exhausted, desperate to help her and also trying to manage our family. That first year I was attending upwards of 2-3 appointments a week, trying to find out what was wrong. We were traveling to London on the train and all over Kent to specialists and different consultants and therapists.
We have felt all the emotions: fear of the unknown; sadness for our daughter and her hearing; guilt that it came from me; anger that the system doesn’t understand CMV better and that the NHS doesn’t warn pregnant women; also inspiration that despite everything she is thriving.
We will always fight for her no matter what the future holds.
We hadn’t even heard of CMV until we googled it when she got her hearing loss diagnosis
To be completely honest, we had little to no support. We saw an infectious diseases specialist once we finally had the diagnosis and they were able to tell us the long-term impacts and put our mind at ease about some things but otherwise there has been no real support for managing CMV.
At 9 months she was sat in a hospital bed before Christmas with a feeding tube and the fear of a neurological disorder. We were told she might not walk or talk and at that point we worried if she would bounce back. To look at her now, independent, thriving at school, with lots of lovely friends, being a true advocate for herself and facing the adversities that she’s been given with strength and determination, it makes us so emotional to see. I never thought I’d see her ride a bike but after months of trying and trying she finally mastered it and what a moment. She attends a local drama group and seeing her perform the Greatest Showman ‘This is Me’ with the group was a real tear-jerker and we are so proud of her.
When we got the diagnosis, there were so many emotions; of course we were scared and shocked and sad, and I’ve learned that it’s OK to be sad. But we were also so relieved. Finally we had a name for what was going on- we could access information and understand the care she needed and how to advocate for her.
Advocating for her needs
What I would say is, I knew. I knew from Day 1 and didn’t stop fighting for an answer, even when I didn’t think I had any fight left in me. Whatever stage of the journey you are at, you will find the inner strength you need to fight for the answers and the care your child needs. Never be afraid to ask for exactly what they need and demand better if the care isn’t met. Also, shout about CMV any chance you get. Only last week someone who had similar issues to us asked if it could be CMV and the heel prick came back positive, so their baby can get the help they need at 6 months rather than 6 years. Now our daughter is 9 I feel able to plough my energies into making sure people are aware of CMV and to fight for better diagnosis and prevention
