We were lucky enough to have been contacted recently by Hannah Cooper of University College London regarding a study she is beginning into children and young people with ANSD. I’d love to think we could help in some way by reaching out to families who would be interested in helping to change the future for families with this difficult diagnosis. Hannah’s intro is below and I have attached (at the bottom) an advertisement for the study. Do let us know if you would like to help or, alternatively, please do reach out to Hannah directly.
“I am a paediatric audiologist with 9 years experience in the NHS. A large part of my job has been testing babies referred from the Newborn Hearing Screening Programme. I went to families’ homes and spent several hours testing babies whilst they slept, and then explaining the results and making a plan with families. Lots of babies I saw turned out to have normal hearing or a temporary hearing loss caused by glue ear. I enjoyed seeing the relief and joy that there was not a permanent hearing problem. But I also got a lot of satisfaction from helping the families of children diagnosed with a permanent hearing loss. I felt that I could offer hope and empowerment, that their baby would be able to achieve his or her full potential with early intervention and not be stifled in their progress, as was common before the introduction of the screening programme.
But then I encountered ANSD. Anyone can have ANSD but babies identified with it through the Newborn Hearing Screening Programme will have spent time in the special care baby unit, and sometimes they will have been very ill for an extended period of time. Diagnostic hearing testing often happens just after babies are discharged from hospital. I imagine there is a certain amount of relief when taking a baby home after a difficult start. So when telling families of babies who had often been through so much already, that their hearing test results showed ANSD, I felt useless. It was difficult to convey anything other than uncertainty and, although I tried my best to give hope, I didn’t want that hope to be false or my advice to be unrealistic.
I tried to find out as much as I could about ANSD. The evidence is confusing and, although it has increased quite a lot over the last few years, it is still not clear how to best help babies diagnosed with ANSD. So I decided I wanted to do some research myself to try to improve the options available to families. I found that there was very limited imaging data on ANSD and new techniques in MRI had shown promise in a variety of different conditions. I am now a PhD student at the UCL Institute of Child Health and Great Ormond Street Hospital. My project is currently for older children and young people with ANSD, and I hope it may be extended to younger children in the future. The aim is for ANSD to be better understood so that children will eventually have access to early and appropriate treatment in order that they too are able to achieve their full potential.
Please do get in touch with me if you would like to know more about the study or if you are interested in taking part.
NIHR/CSO Healthcare Science Doctoral Research Fellow
Imaging & Biophysics Unit
UCL Institute of Child Health
30 Guilford Street
020 7905 2300