Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 << My name is and I am the mother of Lachlan who was born with Microtia in his left ear 16 months ago. >> Welcome and Lachlan!! My son Brayden is almost 15 months old and also born with Microtia in his right ear. I had a very similar situation to you as far as not being told by the doctors a name or any information on Microtia. I was told He is very healthy, but he has the ear " thing " . I'm so happy you found this group. You will find them a wealth of information and support. I also had the questions of Goldenhars and Treacher . I'm sure you'll get a lot of info and advice from everyone here on that. Brayden saw a craniofacial team at the Childrens Hospital. If Lachlan has not seen one yet I would suggest this. Welcome Again. Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Hi Chelvi, Thank you for your letter of support. I do have dealings with a surgeon in Sydney who deals with ear reconstruction and mainly Microtia patients. We have only met with him when Lachie was 5 months old and probably won't see him again for a while yet. All these new questions are a lot easier trying to find answers for on the net as Dr Vandervoord is a very busy and hard to contact person to speak to directly about these questions that come up. The more I am looking into it, the more questions I have. I am wanting to start a aupport group in Australia or Brisbane also and I was hoping you could help me on where to start and what to do. This would be wonderful. Hope to talk to you soon. & Lachie How do I know? Hi everyone from Australia!!! My name is and I am the mother of Lachlan who was born with Microtia in his left ear 16 months ago. When Lachie was born, no one could/did tell us what, why and how and even the name. I had the usual comments from nurses and paediatricians "I have never seen this before". This hurt and I was determined to find out even a name. I came across the name Microtia when he was 4 months old and I was happy to finally have a name for it. But now, the further I am looking into it, I am finding names like Goldenhar Syndrome and Treacher Syndrome. How do I know that I have the right name??? I have also been searching for others associated with Microtia in Australia and around the world and I have only made contact with one lady in the States. We have been communicating for about 6 months now and it has been wonderful and informative. A few weeks back my father came across a woman in Melbourne whose grandson also had Microtia but dad was the first one to tell her what it was called. I am finding this is quite common that people do not know the name of it. I have never seen, met or heard of this before and now thankfully I have found a group where Lachie and I fit right in!!! Thank you Ahrens and Jack for directing me to this group. I greatly appreciate it. & Lachie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 welcome beccy and lachie! you might start with www.earsurgery.com dr brents site... microtia is the failure of the outer ear to develop normally, the auricle; it appears misshapen and/or tiny. there are varying degrees or grades of severity. atresia is the failure of the middle ear to develop properly; the equipment might be ok (the ossicles, tiny bones you remember from biology, hammer/anvil/stirrup (incus/malleus/stapes)) or might be malformed or absent, or the canal may be incomplete or stenotic (reduced..pinpoint size), and this might necessitate separate surgery to get lachie to hear normally if he's a candidate for that. if he's not, others here are experts on the newest aids/implants... a plastic surgeon would repair the outer auricle in perhaps 3 stages of surgery, and lachie will look like a movie star! we even have some adults in this group who have chosen to do this late in life, and i believe are quite happy with it. other syndromes, such as treacher-collins, or goldenhar's (GH) are tougher and trickier and may deal with other more complex facial anomalies. there are several among us who can refer you to the best information about that. welcome aboard..we're thrilled to gave you with us! and a happy new year, mate! jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Hi , Welcome to our group. My name is (Patton) and I am a 40 year old that has just completed reconstructive surgery. I know exactly how you feel. I was 40 years old before I ever discovered that the "birth defect" I had was called microtia and that the lack of an ear canal was atresia. I have unilateral microtia/atresia. I had reconstructive surgery done for the microtia, and I have decided that I am not seeking surgery for the atresia. This group is a very informative and supportive group and I 'm sure you will really find lots of help and advice as well here. I'm glad I found them ...they all sure helped me through a big change in my life...and I really am grateful to them all! Once again ...welcome ! Patton -- How do I know? Hi everyone from Australia!!! My name is and I am the mother of Lachlan who was born with Microtia in his left ear 16 months ago. When Lachie was born, no one could/did tell us what, why and how and even the name. I had the usual comments from nurses and paediatricians "I have never seen this before". This hurt and I was determined to find out even a name. I came across the name Microtia when he was 4 months old and I was happy to finally have a name for it. But now, the further I am looking into it, I am finding names like Goldenhar Syndrome and Treacher Syndrome. How do I know that I have the right name??? I have also been searching for others associated with Microtia in Australia and around the world and I have only made contact with one lady in the States. We have been communicating for about 6 months now and it has been wonderful and informative. A few weeks back my father came across a woman in Melbourne whose grandson also had Microtia but dad was the first one to tell her what it was called. I am finding this is quite common that people do not know the name of it. I have never seen, met or heard of this before and now thankfully I have found a group where Lachie and I fit right in!!! Thank you Ahrens and Jack for directing me to this group. I greatly appreciate it. & Lachie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Hi everyone from Australia!!! Hello !! Welcome to this group!! Always good to get new members. (BTW: we are up to 73 members now!!!) You will find that this group of people have a LOT to offer, in advice, first hand experience, and general support. There are different approaches as to how to "correct" the microtia, and even different opinions on whether to "correct" it or not. Welcome aboard, and ask away. I find it is most effective if you ask specific questions that you may have. name for it. But now, the further I am looking into it, I am finding names like Goldenhar Syndrome and Treacher Syndrome. How do I know that I have the right name??? Microtia refers to the underdevelopment of the outer ear. There are several "grades" of microtia, and they simply refer to the size of the outer ear (I don't know the system, but I believe grade 4 is the most severe, almost no ear at all). Anotia refers to the complete absence of the outer ear. You will also hear of Atresia (Aural Atresia to be specific). This refers to when the ear canal is blocked off. Many children with Microtia, will have Atresia in that ear as well. (BTW: Your son is unilateral, one side effected only, some are bilateral like my son. Issues around hearing and hearing aids can be quite different with unilateral vs. bilateral). Does you son have an ear canal on the microic side? Microtia and Atresia are common with people who have Treacher Syndrome and Goldenhar Syndrome, but with these syndromes there are many other complications as well. Others on this list can help clarify these more than I. BTW: Have you had Lachie's heart and kidneys checked out? If not don't panic. But you should have it done. There is a link between Microtia and problems with heart and kidneys. Here are a couple of notes from my web page: - Approximately 12% of children born with Aural Atresia or similar ear deformation have some kind of heart deformation, and approximately 8% have a kidney deformation. - Aural atresia occurs in one out of every 20,000 births - Children with atresia and microtia are at an increased risk for developing a cholostreatoma (a growth in the middle ear) Check out my web page, you may find it helpful (http://www.pde.com/~kazemir) I have also been searching for others associated with Microtia in Australia and around the world and I have only made contact with one lady in the States. We have been communicating for about 6 months now and it has been wonderful and informative. That is great! We found the same problem when was born. And that is what sparked me to build a web page and this list. It has grown beyond my expectations and I am thrilled to say we have helped many people. name of it. I have never seen, met or heard of this before and now thankfully I have found a group where Lachie and I fit right in!!! Indeed you do! Good to have you here. Thank you Ahrens and Jack for directing me to this group. I greatly appreciate it. And thanks from me too, and Jack. The more the merrier!! Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Welcome to the list! Since others have already defined microtia and atresia for you, no need for me to repeat that... As far as whether or not it might be related to a specific syndrome such as Goldenhar or Treacher ... you would need to consult a craniofacial team and a geneticist for your son to have a thorough workup. As someone with Treacher Syndrome (TCS), I can say that usually there are many more readily-visible signs and symptoms if your child had this rare syndrome. Usually people with TCS have bilateral microtia and atresia rather than unilateral. And while atresia and microtia are pretty much associated with Goldenhar and TCS as well as some other syndromes, it is also quite possible that this was an aberration, unrelated to anything else at all. You will find a wealth of information and good strong support here on this list -- welcome! --Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Hi there & Lachie, I am from Malaysia ... my son Sudesha who is 3 and born with unilateral microtia. I am in contact with Mr a craniafacial surgeon from the children's hospital in Adelaide ... he does not do ear reconstruction. However, he can advise you on facial issues related to microtia... if you'd like his contact no , please let me know ... There is one surgeon here in Malaysia whom I can confidently say deals with specifically microtia patients. I continue to direct parents to him. I have formed a support group here in Malaysia for children with ear canal atresia and microtia and Mr is one of my advisors on facial disorders (hemifacial microsomia) Welcome to Steve's discussion group on the net ... you are on your way to alot of information!!! Love Chelvi How do I know? Hi everyone from Australia!!! My name is and I am the mother of Lachlan who was born with Microtia in his left ear 16 months ago. When Lachie was born, no one could/did tell us what, why and how and even the name. I had the usual comments from nurses and paediatricians "I have never seen this before". This hurt and I was determined to find out even a name. I came across the name Microtia when he was 4 months old and I was happy to finally have a name for it. But now, the further I am looking into it, I am finding names like Goldenhar Syndrome and Treacher Syndrome. How do I know that I have the right name??? I have also been searching for others associated with Microtia in Australia and around the world and I have only made contact with one lady in the States. We have been communicating for about 6 months now and it has been wonderful and informative. A few weeks back my father came across a woman in Melbourne whose grandson also had Microtia but dad was the first one to tell her what it was called. I am finding this is quite common that people do not know the name of it. I have never seen, met or heard of this before and now thankfully I have found a group where Lachie and I fit right in!!! Thank you Ahrens and Jack for directing me to this group. I greatly appreciate it. & Lachie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi ! My name is beth and I have a 9 yr. old son, , who is currently having his ear reconstructed by Dr. Burt Brent. He has unilateral microtia (right side) and atresia. He also has hemi-facial microsomia, which is now often referred to as Goldenhaar. If I can help with any questions, please let me know! Welcome aboard! Love, beth > >Reply-To: AtresiaMicrotia >To: AtresiaMicrotia > >Subject: How do I know? >Date: Fri, 28 Dec 2001 08:30:58 +1100 > >Hi everyone from Australia!!! >My name is and I am the mother of Lachlan who was born with >Microtia in his left ear 16 months ago. >When Lachie was born, no one could/did tell us what, why and how and even >the name. I had the usual comments from nurses and paediatricians " I have >never seen this before " . This hurt and I was determined to find out even a >name. I came across the name Microtia when he was 4 months old and I was >happy to finally have a name for it. But now, the further I am looking into >it, I am finding names like Goldenhar Syndrome and Treacher >Syndrome. How do I know that I have the right name??? >I have also been searching for others associated with Microtia in Australia >and around the world and I have only made contact with one lady in the >States. We have been communicating for about 6 months now and it has been >wonderful and informative. >A few weeks back my father came across a woman in Melbourne whose grandson >also had Microtia but dad was the first one to tell her what it was called. >I am finding this is quite common that people do not know the name of it. I >have never seen, met or heard of this before and now thankfully I have >found a group where Lachie and I fit right in!!! >Thank you Ahrens and Jack for directing me to this group. I greatly >appreciate it. > & Lachie _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
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