I found out at my 20 week scan that something wasn’t quite right with my little girl.
We were told her cerebellum in her brain was missing, and that this would affect her mobility and she would have learning difficulties, and we were referred to UCH hospital in London.
That crushed me – her brain. There’s nothing they can do about that. UCH gave me an MRI scan and took bloods from me. The MRI scan came back that her cerebellum was there, just underdeveloped, and the specialist said she should be completely fine. I was elated.
3 weeks later, I received a call from a receptionist at UCH, telling me that my bloods had come back showing that I had caught an infection called CMV, and that it was quite common. They arranged another meeting with me, and to be perfectly honest I wasn’t that worried. The receptionist had seemed quite relaxed about it, and her saying it was ‘common’, made me think it was something easily got rid of.
During the second meeting with the specialist, I was told that my little girl would more than likely be severely disabled, blind, deaf, probably never walk, never talk and this could affect her chances of survival. I was devastated. I twice refused a termination, and decided to discharge myself from any more tests until she came into the world, but my partner of 6 years said he couldn’t cope with a brain-damaged baby and he left.
17th September 2011, at 10.30am Ava Mae arrived into the world weighing 5lb 8oz. She showed no signs of CMV at birth – no rash, no enlarged organs – and overall paediatricians and specialists were pleased and amazed by her and how well she was doing. She spent 3 days in hospital having countless blood tests, urine samples taken and another MRI scan, all of which confirmed congenital CMV.
Ava failed the newborn hearing test and we were referred to audiologists for a further examination. She was confirmed as having bilateral moderate – severe hearing loss (moderate in her right, severe in her left.)
At 4 weeks old Ava was admitted to Great Ormond Street to start the Gancilovir treatment. She had a line fitted into her chest, and was given the treatment twice daily for 6 weeks, which she tolerated brilliantly.
Ava was fitted with her first set of very cute pink hearing aids at 10 weeks old, however we saw no improvement and when she was rechecked again at a year old her hearing had gone completely. At 18 months Ava was fitted with bilateral cochlear implants, which she has tolerated fantastically.
Ava is now 3 years old, and although she faces some challenges she is completely surpassing everyone’s expectations.
She has recently been diagnosed with dyspraxia which is why she is still not talking, however her understanding since having implants is excellent and she now responds to spoken language with sign. She started walking at 21 months and has recently been discharged from physiotherapy, although she still receives occupational therapy for her fine motor skills.
She attends a mainstream preschool that has a hearing unit, and despite the fact she can’t talk has a huge group of friends!
I don’t know what the future holds for us, but I cannot begin to put into words how proud of her I am for all she has achieved and all she will continue to achieve.