Ear reconstruction seems quite a strange topic until I explain that my Son Harry was born with a cranio-facial condition called Goldenhar Syndrome. One of the aspects of this syndrome include a small (or in Harry’s case completely missing) ear. In discussing the options for creating an ear for him as he grew we were given two very different routes. One involved using part of his rib to graft to the side of his head (with a small possibility that his own body could reject it) and the other was to create a prosthetic ear which could be removed daily in the first instance.
As Harry is non-verbal and has no way of communicating his levels or location of pain to me I (along with his Dad) decided to opt for a prosthetic ear and I have blogged before about what it looks like and how it is attached (both pretty short posts and neither as boring as they sound)
When Harry was born back in 2005 I wasn’t on the newly developed Facebook site and there certainly weren’t the support groups that there are today. I am part of a few now and recently saw a post from a mum called Helen who was updating the group on the progress of his son after a recent operation to create an ear for him. Keen to know a little bit about how life would have panned out for us if we had taken the other option for Harry I asked if she would be willing to chat with me about it. I’m very grateful that she agreed. Here’s what she said.
Thanks so much for agreeing to chat with me Helen, first off could you tell me what your sons diagnosis is and how this affects him day to day and for the future?
Luke has right sided Microtia. He doesn’t have an ear canal on that side so hears from his left ear only. Luke has always coped well hearing with just one ear and hit all of his developmental milestones. He struggles to hear when there is lots of background noise and when playing sport as he can’t hear people yelling ‘pass’ etc! Also, I won’t let him ride a bike on a road as he can’t tell which direction sound is coming from. Luke has been very fortunate to have never been bullied. He has a good, supportive friendship group and is naturally a friendly person.
Has Luke had any operations in the past?
No, he’s not had any operations before. The first stage ear reconstruction is his first.
When you were thinking about options for his ear reconstruction what information were you given and by who?
When Luke was born in 2004, there was very little information available to us. Nobody at our local hospital where he was born knew what it was. We made it a mission to find out everything we could. Initially I trawled the internet, reading everything there was to read, most of it American at that stage. Luckily when Luke was 3 months old we were referred to Great Ormond Street Hospital. Here we were told about ear reconstruction using rib tissue and also about prosthetics.
Which option did you choose and why?
We chose rib ear reconstruction, well actually it was Luke’s decision and he had considered it carefully over a few years.
How easy or hard was that decision for him?
As it was completely Luke’s decision it made it a little easier for us really and we supported his decision 100%. We also made it clear that we wouldn’t mind if he changed his mind- even on the day of the operation!
What did the operation involve and how long did it take?
The operation involved them removing some of Luke’s rib cartilage and shaping it into an ear, they fashioned it on a stencil of his left ear. They then made a pocket of skin and inserted it underneath. He has suction drains attached to his head to keep the shape of the ear for the first 4 days. He was in theatre for 3.5 hours (the longest of my life!)
Wow! That’s amazing. How is Luke feeling after the procedure?
He’s is in some discomfort following the op, mainly around the ribs rather than the ear. He says it feels like a bad stitch and hurts to sit up or cough etc. However, this is quickly subsiding and he’s feeling brighter already – we are just at the end of day 2. Despite the discomfort, Luke is thrilled with the result and doesn’t regret it.
Will there be future procedures, if so, what will they involve?
Yes, in 6 months time Luke will have stage 2 which involves using a tiny piece of rib which has already been harvested, to lift the ear away from his head to give a more natural 3D effect. This is a shorter operation and usually only an overnight stay as opposed to the 4 night stay for first stage.
Will he be able to hear through the ear? If not, are there plans for him to have a hearing aid in the future?
The operation has not changed his hearing, it is currently not practiced to try and restore hearing by creating an ear canal. It is considered too risky and has a low success rate. Luke has said he will consider a Baha attract hearing aid in the future which is a magnetic aid hidden under the scalp. Currently he says he doesn’t struggle too much with hearing but he understands that hearing deteriorates with age.
How does Luke feel about his new ear?
He’s already really pleased with his new ear and it is still swollen, bruised and has stitches. He can’t wait for the second stage to be over and done though as he doesn’t like operations.
What would you say to a parent at the start of their journey who might feel overwhelmed with the options and choices ahead?
My advice for new parents that have a baby with Microtia would be to firstly join the Microtia Mingle Facebook group as it is so supportive and informative. If it had been around when Luke was born it would have made those early days much easier for us. When Luke was a baby I couldn’t wait until he would be old enough for surgery but as he grew up I realised that was down to my anxieties and not his. Luke has always been a happy boy with friends and lives a full life. We are so glad that we left the decision to Luke to make. Ironically now, I wouldn’t have minded at all if he opted for no treatment at all but I’m so happy for him, he’s been very brave and grown up about it all.
Thanks so much for your time Helen. Wishing your son a speedy recovery and sending you lots of cheese and gin!
I hope you found that helpful if you are also on the journey both Helen and I have travelled so far and interesting if you’re not but just wondered what options were available for children like ours. Whichever option parents choose for their children one thing is for sure, medical science is amazing!
If you would like to read the first chapter of my book, click here for a free download or here to purchase the book which is out now with brilliant reviews
Thank you for sharing your story, it really is helpful, and sincere best wishes for your son for the future.
My 12 year old grandson, Luca, has right sided microtia and has just had his first consultation with Mr Sabagh at the Royal Free hospital in London. We live in West Yorkshire.
I hope Lucas consultation went well and he and your family feel more confident with the next steps C x