Haidee Posted March 8, 2017 Report Share Posted March 8, 2017 Hi everybody, As I mentioned before, my name is Haidee, I live in South Africa. I can remember from when I was very little, probably around 4-5 years old, being in a hearing booth testing testing testing. My mom took me to so many audiologists and ENT specialists over the years, because she suspected something was not right. But unfortunately all of them told my mom, not to worry, there is nothing wrong with my hearing, my left ear and canal is just smaller than the right. In 1996 I had my first son, he was born with little growths in front of his one ear, I cannot even remember which ear it was. Nobody really thought anything of it, I had a plastic surgeon remove it when he was about 4 months old and that was the last of it. He had hearing tests done before going to school and luckily there was nothing wrong with his hearing. Some time during my adult life, I started realising that I cannot hear well. Long story short, I've been to more audiologists and ENT specialists, had a few ear operations where the middle ear bones were replaced with prosthesis etc. I found these operations extremely traumatic and after none of it actually doing anything to increase any amount of hearing I had, I just thought well that's it, I'll live like this and deal with it. In 2013, my third son was born with Microtia/Atresia of the left ear. The audiologist who came to visit us in hospital to test his hearing, was absolutely astounded at what I've been through and still could not hear. With her help, I ended up getting a BAHA on the abutment in 2014, which was amazing. Only then did I realise what I've missed all my life.....and why I hated school with such a passion!!! I've been ridiculed, teased and was always in trouble for being disobedient and not listening.... We've now been blessed with a group of Doctors who are all angels in our lives! My little man, Tiaan, received his Vibrant Sound Bridge in September last year and is doing so well. He loves it and seeing his little eyes sparkle every time I put it on, is amazing. Prof Henning Frenzel from Germany came to South Africa and performed Tiaan's operation. So when he saw my BAHA abutment and how I'm struggling with constant infections, he suggested that I get the Bonebridge. Prof Frenzel came back to South Africa now a week ago, he removed my abutment and screw and implanted the Bonebridge. Unfortunately the day after being discharged from hospital I started having extreme pain and was admitted back into hospital. A hematoma formed and pushed blood from behind my ear, through to my eye....hahaha, looks like I've been in some hectic bar fight. I've been discharged, but is still experiencing quite a bit of pain and headaches, I'll give it a few days and then give the ENT specialist a call again. For now I'm really exited to get the external device fitted and switched on, but will have to wait a while for the scars to heal and swelling to go down. Myself, another mommy with a little one with Microtia/Atresia and a friend we've made who also have Microtia/Atresia and Goldenhar syndrome are trying to spread awareness and find assistance for children in South Africa, as here isn't really much info or specialists with knowledge in this arena. And I would do anything to help a child to not go through life, specially school life, like I did. It is heart breaking. Regards, Haidee Ivana Marinac 1 Quote Link to comment Share on other sites More sharing options...
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