May 2011
Ours is a relatively simple story, so whilst it is great that the media portray worst case scenarios, it’s good to realise that the number one effect is hearing loss, which is the only thing that Ava was affected with as a result of CMV.
Ava was our second born daughter in May 2011. My pregnancy was fairly complicated from the outset with unexplainable bleeding throughout and then very early on with scans showing ‘small for dates’. I also had pre-eclampsia again from 32 weeks which was expected as I had it in my first pregnancy also. Generally I was relatively ‘well’ until the end with no cold-like symptoms at all from recolection.
As a result of the pre-eclampsia and also the fact that Ava was showing little sign of growth or movement, doctors decided that Ava was to be born at 36weeks by emergency section. At first she was fine but it soon emerged that she was actually quite poorly and quickly referred to the neo-natel unit for further investigations. She has asymptomatic hypoglycaemia, some mild jaundice, mild thrombocytopenia and talipes calcaneovalgus. Ava failed her newborn hearing screen test on Day 2 and this was followed up by repeat tests on Day 5 and 2 weeks after that.
It was confirmed that Ava had a severe if not profound hearing loss by the time she was 3 weeks old. She spent the first 2 weeks in neo-natal care and returned at 5 weeks old following suspected meningitus but what was confirmed as Group B septicaemia. It wasnt until she was back in hospital following contracting Group B that a lumbar puncture, further bloods and the ultimate urine PCR confirmed that she in fact had/contracted in utero CMV (had a high viral load for CMV in the urine) and this then became the main suspect for her hearing loss. We then has subsequent MRI and CT scans on her brain which showed some calcifications, but otherwise she was in good health, it was just her hearing that had been affected.
Ava subsequently underwent Valganciclovir treatment for 6 weeks intravenously. It was stopped after this time when it was deemed that there had been no imporovement with her hearing. Ava was fitted with her first set of hearing aids at 5 weeks old and from 6 months old attended private Auditory Verbal Therapy to start her transition into a hearing and speaking world. She had bi-lateral cochlear implants fitted at 13months of age at Oxford John Radcliffe. We had an extremely positive experience at the hospital with no problems at all. Ava was ‘switched on’ 3 weeks later and has been hearing since June 2012. She is now 3 and a half years old and is already on a par with her peers in terms of her speech. We have been driven in our quest to make sure that she is not held back in anyway because of her deafness and she continues to hear so well 12 hours a day with the use of her implants. We have high hopes for her future, she currently swims, plays tennis and ski’s. She is the happiest, most loving little girl.
Before Ava was born, like so many others, we had never heard of CMV. We don’t feel bitter in anyway, it was ‘one of those things’ but I do wander if I would have acted differently had I of been more aware, particularly if I had been tested for CMV at the point of ‘trying for a baby’. There is the argument that there is no point in testing at a booking in stage at early pregnancy as you may have already contracted it, but if everyone knew their ‘status’ prior to even getting pregnant it may be at the back of their mind more to be more mindful with hand washing and sharing their toddlers cutlery for example!