July 2018
Our Story – Orla and Cytomegalovirus.
On the 2nd July 2018 my wife Hannah went in to labour, it was unremarkable (at least as much as such a thing is) and Orla was born shortly after we arrived in hospital. We now had a most beautiful daughter and Arlo and Ethan had a little sister. Of course the following story does not change that and Orla is the same person she was when she arrived and will be forevermore. A little girl loved by so many and doted on by her Mum, Dad and brothers. However in the preceding 3 months we were asked to go on a significant journey that required a great deal of information processing, emotional challenges and re-evaluation of what we thought was to be. (This journey will continue)
On the 2nd July Orla in fact failed her hearing screening tests (administered to all new borns). This is not that rare and such failings can be down to numerous insignificant issues. Failing the screening meant a visit to the audiology department and a ‘full’ hearing test. This was 10 days later and any of those normal issues should no longer be present and so this test would discover the extent of any serious issues present.
Learning that you child has been born atypical (that is to say not as both Hannah and I would have expected) is a difficult blow. It turned out that Orla was profoundly deaf in her right hear and deaf to varying degrees in her left depending on the pitch (at very low pitch it is normal and deteriorates as the pitch climbs until her hearing loss is severe). Normal practice upon a child presenting congenital hearing loss is to screen for the presence of Cytomegalovirus – at the time we barley acknowledged the requirement for the test let alone the further ramifications that might be as we were somewhat shell shocked and we left for home.
Hearing loss in the modern world is very well managed with the invention of extraordinary technological aids, speech therapy, teachers of the deaf and of course social acceptance. We were both quick to recover from the initial shock of Orla’s diagnosis and 3 or so days later we were back ‘on an even keel’. I had gone back to work and we were now able to do enjoy our beautiful daughter and turn our attentions towards this ‘CMV’. This included learning what it was in the first instance and even now I have not met someone outside the CMV envelope who has heard of it.
After another 2 weeks (3 and a half weeks after birth) the swab results were still not in but we were still given an immediate meeting with a consultant at St George’s Hospital in Tooting. We had been told previously that babies born with CMV had to go on to antiviral treatment within 1 month of being born. This treatment is important as it helps supress the virus while Orla’s immune system strengthens enough to be able to hold the virus at bay and mitigate any further damage. Our meeting with the consultant was 2 days prior to this deadline and we did not know for sure (although we all suspected) that Orla had CMV. The excellent consultant prescribed us the (very potent) antiviral medicine while we waited for the results which were received a few days later – as suspected they were positive; this put us on the path of a great deal more tests.
Up until this point we had managed to leave Dr Google out of it but the temptation now was overwhelming and the information received back was emotionally very testing. The full spectrum of issues varied from being asymptomatic to most severe care requirements imaginable. Hannah was working overtime now looking after three children, baring the same emotional burden as me and taking Orla to countless consultations and check-ups. The flurry of further testing was designed to see what damage the virus had done – Orla’s blood was tested again as well as her eyes, organ function…and her brain.
Being told that your new born baby has brain abnormalities is a moment in time that seemed to last for ever and one we will never forget. Of course, naturally you assume the worst and with no one able to say what the results of the scan mean nor what will manifest itself in future Dr Google rears its ugly head and causes untold anguish. We have received some very lovely support from numerous friends and family, but it was Hannah’s professional friends who offered the most sound advice. ‘Treat the child not the scan’ is a phrase that really helped evaluate who Orla was in our eyes and humanise our exceptional baby girl. This concept helped in untold ways to understand how to react to the information we were receiving.
Orla will be whoever she is and nothing can change that. Already she is laughing and has a killer smile and we would not change her for the world. Whatever the future holds we will hold it together.
Henry & Hannah