Lydia is one of non-identical twins, born on 6th April 2011 at 38 weeks in Welwyn Garden City with her brother Isaac.
Lydia was very small at 1.8kg (3lb15oz) so she was taken up to special care to be checked over, then was brought back to me as she was fine.
The following day she had her newborn hearing screening, which she failed in her left ear. I was told this is fairly common and was probably due to “gunk” being in her ear still from the birth, but we would be referred to audiology and they could check it again at a later date. Later that same day, a nurse opened the windows on the ward and Lydia’s temperature dropped. They whisked her away and put her under heat lamps, saying she was having a “dusky” episode. They then started both her and Isaac on IV antibiotics in case they had an infection. They did blood tests on them both, and a lumbar puncture on Lydia (in case it was meningitis) but all tests came back clear. Seemingly they had no infection, but we then had to stay in hospital for 7 days for the twins to finish their course of antibiotics, which frustrated me no end as, after having a natural birth, I had been looking forward to getting home with them.
In due course, we got home and received our appointment at audiology some 6 weeks later in Stevenage. At this appointment, they did ABR tests over about 3 hours and then sent a doctor in to see us. This doctor told us that Lydia was deaf in her left ear, that there was nothing that could be done about it, that hearing aids/implants wouldn’t help her, and that we shouldn’t look it up online as there are a lot of false stories out there. As you can imagine this was horrible for a new mum to hear and probably contributed to the postnatal depression that I suffered. She also mentioned that we should probably get a mouth swab done to test for CMV just in case. I had this done at my GP’s surgery the next day but unfortunately, this never arrived at the lab. We then had several appointments, some of which were cancelled/rearranged without my knowledge, and we were then discharged with a stroppy letter. As we were then due to move to Kent, I decided to wait until then and get referred to a new audiologist in Kent.
We then saw Dr Nandi in Gravesend hospital who did a series of tests. He found that she had some degree of hearing in her left ear but explained that it is very difficult to determine how much she is hearing from her right ear as the “good” ear often makes up for the “bad” one. He also explained that because she was obviously hearing fine in her right ear there was no point in giving her a hearing aid, as this would just introduce a lot more background noise and confuse her.
He also mentioned CMV and asked for a urine test to be done and referred her for an MRI at Great Ormond Street. Unfortunately, the urine test was also lost and the results from her MRI took 4 months to come back, so by this point, she was 2 years old. The MRI showed signs of a virus having damaged her left ear so we had further urine tests done by Dr Bhaduri at Maidstone hospital. Both of the twins showed as having had CMV at some point, so we had blood tests and more urine tests done which showed that Isaac was fine but that Lydia was still secreting the virus.
We were then referred to St George’s Hospital in London to see the children’s infectious diseases team. Our appointment was in February this year, where the doctor said she needed to gather all of Lydia’s test results together and consult with the head paediatrician to decide if Lydia would be treated for CMV or not. She was extremely apologetic about the fact that Lydia would probably not be treated, as by this time she was almost 3 years old, and the treatment was shown to be most effective when it is given to infants.
I could not quite believe that if they had tested her for CMV immediately after she failed her newborn screening test she could have been treated and we would not now have the constant worry of other symptoms appearing.
The doctor actually told us that now if a newborn fails their screening, they do test for CMV and treat them immediately. The fact that this is now procedure makes me wonder if it should have been at least considered such a short time ago. She also said that it can be tested from the blood spots on the Guthrie card- so there was no need for all the other tests to be done/go missing! All of this made me extremely thankful that Lydia only has her left ear affected (at the moment, touch wood!), but also to wonder how many children are out there with hearing loss, sight problems and learning difficulties, who may never have even been tested for this virus, and who may not have even half of their symptoms if they had been treated at birth.
Written by Vikki Johnston, Lydia’s Mum