Angus was born on New Years day 2004. He was born with unilateral microtia to the right side.
Today we are over 10 years into a journey that has taken us places beyond the reasonable expectation of any first time parent. We now have the benefit of a perspective which allows us to look back positively and with a feeling that we have held a degree of control throughout, but it wasn't always that way.
Those first few years were very challenging. We were without any reasonable degree of information or understanding about microtia, and at the same time a variety of additional problems and issues presented - some of which required surgical intervention.
Those first three or four years it felt that it was just one thing after another. We saw numerous consultants and specialists, and at times it seemed as if we were under every department in the hospital. To this day Angus has endured somewhere between 20 to 25 operations—we stopped counting to preserve our sanity—many relatively minor, but a few more significant surgeries. These include day-case ops for a tongue tie, skin tags and grommets for glue ear, but longer operations included Submucous Cleft Palate repair, Pharyngoplasty, and 1st stage ear reconstruction.
Specialists have included speech therapy, audiology, orthodontics, genetics, and teachers for the deaf. There have been undoubtedly positive experiences but there have also been some less so. Not everything detailed here was as straightforward as I have outlined. In fact, very little has been straightforward.
Angus is now 10 and a half and is a confident, happy, cheerful & likable boy with a cheeky sense of humour. He will try his hand at anything, will openly chat about his microtia and generally just gets on and enjoys life.
My husband embarked on a charity challenge in 2011 to raise money for charities Changing Faces & The Sick Kids Friends Foundation, the fundraising arm for the Sick Kids hospital in Edinburgh. He and his team did extraordinarily well in raising over £107,000 that was split between both charities.
This resulted in The Sick Kids collaborating with Changing Faces and funding a hospital-based Changing Faces practitioner, the first of its kind in the UK. This practitioner is on hand to offer help and support to children with conditions affecting their appearance, and to their families.
Angus himself was inspired by this and decided this New Year—after his "Big Op" last December—that he wanted to do something himself to "pay back" both charities. Angus has benefited from attending a couple of the workshops run by Changing Faces. In his words, "they have helped me cope with looking different". So he and his team of 4 friends cycled 16 miles in May from home to the Sick Kids in Edinburgh. He raised over £7,000.
Last year Angus embarked on the first stage of his ear reconstruction journey. We are under the care of Mr Ken Stewart's team at the Royal Hospital for Sick Children in Edinburgh. The decision to have the surgery was very much led by Angus and it was his decision. It was incredibly challenging to ensure that Angus was making the right decision for the right reasons; trying to ensure he wanted to have it done for himself, not because of any parental or societal pressure. Similarly, if he didn't want it done, it was ensuring that the decision was based on rational thinking, not because he didn't want to miss a Christmas party. Ultimately, he decided to have the operation, and his decision making was clearly evident at clinics and in discussions with the surgical team.
Unfortunately a middle ear implant was not suitable for insertion at this time but we are confident that with constant medical developments there will be something in the future that will supplement his current unilateral hearing. Angus will undergo the 2nd stage reconstruction in August.
If only we had known how Angus would turn out now then perhaps it would have made a difficult first few years that bit easier. He has additional needs perhaps but he does not have any disability.
He certainly inspires me with how he deals with all the clinic visits, tests, x-rays, interventions, hearing aids, & surgeries in such a mature manner. (In stark contrast to his 7 year old sister who often needs a plaster on a daily basis for something, or more commonly nothing!) He does indeed have a wise head on his shoulders & makes me proud to have him as my son.
Please get in touch if anyone wishes further info on any aspect of our journey.
You can still read about the fundraising on www.eurochampschallenge.com.
Find more about the Changing Faces post here: http://www.edinburghsickkids.org/press-and-news/news/2013/09/05/changing-faces-practitioner/