Life Stories and Experiences

Story of Liz Jones July 2014

Mother of a child born with bilateral Microtia and Artresia

Proceeded to set up a national support group called Microtia Mingle UK and the first UK based Microtia charity

In May 2009 my son Isaac was born, which was the most special day of my life but also one of the most traumatic. Shortly after birth we noticed that both his ears were underdeveloped. We had a long wait to see a paediatrician and then the long stream of tests and scans started. I was desperate to just enjoy my beautiful new baby but we were living on a knife's edge not knowing what the results of tests and scan would hold.

We feared many things – will Isaac be profoundly deaf? Will we have to learn sign? Will we ever be able to communicate with him? Would he have learning difficulties? Would he have other medical problems? Would he ever walk? Our list of questions were endless and no-one seemed to have the answers.

At the age of six weeks old Isaac received a bone conduction aid on a headband which gave him the ability to hear most things. Over time the appointments became fewer and further between and we could enjoy our lovely little boy.

However, I was still left with so many questions and felt pretty isolated and alone. I tried to find other people with Microtia in the UK but could not find anyone. I was left wondering whether Isaac was the only one! I was desperate to know what the future held for Isaac and really wanted to speak to someone who was going through the same thing.

When Isaac was 18 months old I decided to take matters into my own hands by setting up a support group for children, families and adults affected by Microtia in the UK. In just under 4 years Microtia Mingle has over 600 members! The group is highly valued by its members.

We have an on line forum (through Facebook) which allows people to have daily contact and support. The forum is used to share experiences, ask questions and to get to know other people affected by Microtia. We also have a website which contains useful resources and links to articles and blogs.

Each year more and more mingles are being organised across the UK. This year meets have been organised in London, South of England, North of England, Wales, N.Ireland and Scotland. Mingles give people the opportunity to meet face to face and they help us to develop as a community. Our members range from babies with Microtia to teenagers and adults. We have some truly inspiring and positive role models amongst us!

I have also written a book for young children with Microtia to help them to become aware of their little ears and their bone conduction aids. It is called Isaac and Lilah (copies can be ordered through our website).

I have recently set up the first UK based Microtia charity called Microtia UK, with two exceptional mothers of children with Microtia – Hana Thalova and Ali Daniels. We hope to achieve many things, including: promoting a positive view of difference, developing the Microtia community and funding research.

Isaac has just completed his first year at school and he is a bright, sociable, athletic and funny little boy. We wouldn't have him any other way!

Image Isaac aged 3 Image Isaac 4 weeks old