Life Stories and Experiences

Taylor Berndes's Story

Taylor’s Story

Taylor Berndes Taylor Berndes

When we discovered that Simone was pregnant again we were absolutely delighted with the news. It was a real surprise but it was the best early Christmas present we could have hoped for.

At the 20 week scan a shadow was picked up on Taylor’s lung. We were referred to University College Hospital (UCH) for a more specialised scan and they told us that Taylor had a Congenital Cystic Adenomatoid Malfunction (CCAM) in his right lung. A CCAM is best described to the layman as a type of cyst. This was on Christmas Eve 2010.

We had weekly scans at UCH but as Taylor grew the doctors became less concerned about the CCAM’s potential impact. However, as we knew Taylor had this to deal with, we decided it would be best that he that he should be delivered by a selective caesarean.

Taylor was born at about 3am on 9 June 2011 and came out screaming! It was a wonderful moment to know that he had arrived safely. The doctors took him into a side room to check him out and I went with them. It was at this moment that is when I noticed something very different about his ears. The doctors said that it was fine and they may be a little compressed. We found out later that Taylor had been born with left sided Microtia and right sided atresia.

At first we were shocked about what was happening. The doctors didn’t seem to be able to tell us anything about Taylor’s condition and we felt lost and confused. Why had this happened to our new little boy? His twin brothers Dexter and Sebastian came to see him the next day dressed as Speed McQueen and Bob the Builder. It did bring a smile to our faces.

However we soon realised the enormity of what we were facing. What had happened to Taylor? What was his prognosis? It did feel, at that time, that the world was against us and we were on our own. The next few weeks were a flurry of appointments and visits to hospitals we never knew existed. It was at the Nuffield Hospital in London that we found out about what kind of hearing Taylor might have.

When Taylor was about 6 weeks old we returned to the Nuffield so that he could be fitted with a BAHA on a soft band. We weren’t sure what to say at first, we both said “Hello Taylor” together very softly. The reaction was magical, Taylor’s face lit up and there wasn’t a dry eye in the room!

It was at this time that one of the doctor’s gave us a leaflet called ‘Microtia Mingle’. She said that it wasn’t anything to do with the hospital but she had heard good things about them.

We contacted Liz Jones at Microtia Mingle and were amazed to find out she lived about a mile away from us. I met Liz and her son Isaac in our local park a few weeks later. When you think you are the only person who is in this world with Microtia, it was wonderful to discover such a fantastic network of support. Our family and the Jones’s are now firm friends and I can’t say how great Liz has been to us.

Taylor is now 4 years old and started at reception in September 2015. He is a confident little boy and regularly gives his twin brothers who are now 7 a run for their money in every aspect of life. He is doing very well at school but we are constantly checking to make sure that he can access all the sounds and support that he needs so that he can reach his full potential.

I can’t think of any aspect of life where Taylor’s Microtia has held him back. I tell family and friends that he will outshine us all! He loves being out and about and has started playing rugby for Enfield Ignatians RFC with his brothers. He is even in the same training group as Isaac, Liz Jones’s son.

4 years ago, when Taylor was born we didn’t know what we were facing or what the future held. I don’t think we couldn’t imagine then where we are today. We have the most wonderful, confident, popular and charismatic son.

Simone, Dexter, Sebastian and I are very proud of our boy.