Laura & Beth: A Story of Love and Resilience
When I was pregnant, I had a few blood tests come back with raised white cell count and my lovely, brilliant, diligent midwives referred it to an obstetrician each time who always dismissed it as nothing to worry about. I duly thought little of it and carried on. My bump was measuring a little small a couple of weeks ahead of our due date so we had a growth scan. All looked OK but I had a big shock when our baby arrived just three days later, 10 days early. The birth was amazing and quick. When Beth arrived, she was covered in tiny purple pin pricks. Again, the lovely, brilliant, diligent midwives referred it to a paediatrician who put it down to the fast delivery (go faster stripes?!).
The next morning a lady with a trolley arrived (I thought she was going to make me a cup of tea!) to do the newborn hearing test. Beth’s right ear passed within a few minutes but her left didn’t respond at all. Again, we were told this was likely because the fast delivery hadn’t cleared the mucus from her ears….wrong. The test was repeated two weeks later with the same result. When Beth was five weeks old, I found myself and our tiny baby at the Children’s Hospital in Glasgow where she had seven hearing tests which confirmed that she had a severe to profound hearing loss in her left ear.
Whilst I feel extremely let down by the obstetrician to whom my blood results were referred and also the paediatrician that looked at Beth on the first night, I am so thankful for the wonderful audiology team at the Children’s Hospital. They were amazing and got me in with a consultant there and then. It is my firm belief that my dodgy blood results were the CMV and that I should have been screened. I held a lot of anger for a long time that the obstetrician and paediatrician missing multiple signs of cCMV meant that Beth was not eligible for the anti-viral drugs (I don’t know if we would have gone down that path but we would have liked to have the choice).
What a rollercoaster! Prior to diagnosis we were told firmly not to Google CMV. Of course, my husband did and terrified himself in the process. However, we are the lucky ones. I felt so incredibly unlucky in those early days, wondering why us, what we had done to deserve this but knowing what I know now I know we are incredibly lucky. So far, the impact of CMV on Beth seems to be limited to her hearing loss, which is amazing. I still can’t quite believe it. I remember being especially terrified that she would lose her sight.
I think, for me, our hope is renewed each day when we consider how lucky we are that Beth has not been more severely impacted by the CMV. In terms of resilience, we had a terrible experience with a consultant in Australia who tried to force us into cochlear implants and I felt very grateful that I was able to advocate for Beth and question the merits of that path for her. It was hard and I cried when we left (there have been a lot of tears along the way as I look back).
I want other families to know that it might not be as bad as it seems although I know that might be hard to believe faced with the information you get in those early days and no matter what you will love your child fiercely because to you, they are perfectly them