Dr. Sheryl Lewin with Patient你的孩子是受多种因素影响小耳畸形的心理影响, 包括你的文化对孩子的态度,在外观上的差异, 你的知识和态度,小耳畸形, 您孩子的年龄, 个性和性别, 的小耳症的严重程度, 挑逗你的孩子经验和同行的水平. 你会欣慰地知道, 但, 该方法 您孩子的先天性小耳畸形的处理将是最强的因素,他们有能力创造和保持一个强有力的自我形象和自信.




当我的孩子会注意到他/她的小耳畸形?

这是一般认为儿童知道它们是如何像不像其他人在两到三年的年龄. 小耳畸形的儿童开始注意到他们的耳朵(小号) 不像其他孩子的, 自然, 其他的孩子会盯着, 意见和提问, 甚至是逗你的孩子, 尤其是当你的孩子开始参加社交活动前学校或幼儿园.

我怎样才能帮助孩子处理小耳畸形?

与您的积极支持, 其他家庭成员, 教师, 和朋友, 你可以帮助你的孩子成功地处理与他人的反应,以及他或她自己的小耳畸形的内部斗争. 当你的孩子会根据他或她的性格回应, 一个支持, 物的事实的方法,帮助您的孩子都明白他们的耳朵小耳畸形和计划(小号) to be repaired can minimize the risks for low self-esteem and lack of self-confidence. To help prepare your child for questions and staring when they are in social settings, practice different ways to respond with them. 例如, 您的孩子可以说: “我出生在小耳畸形, 这意味着我有一个小耳. 医生们帮助我,我感觉很好. Let’s go play.” Remember, 小耳畸形是精彩的儿子或女儿,而不是他或她的整个人只是一个方面,. 以任何其他方式提高您的孩子! 这将很长的路要走,旨在帮助您的孩子应付小耳畸形,避免社会困难与同龄人的, 社交退缩, 与学术和行为问题.

如果我们计划的早期手术或等待,直到我们的孩子可以参与决策?

有些家长调度耳再造手术,以防止他们的孩子从5岁前经历戏弄和自我意识. 其他家长决定等到自己的孩子是老得足以当参与决策. 如果你的孩子没有明显的关心或自我意识,关于小耳畸形, 并进展顺利,学业和社会, 有可能是没有必要为早期耳再造手术. 通过仔细观察你的孩子如何处理小耳畸形, 通过深入研究和评估你的选择, 你是在一个很好的位置来决定什么是最好的选择为您的孩子.

有关于小耳畸形对儿童的心理影响的研究?

是, 有, 但迄今为止,所有的研究上小耳畸形的心理影响, (耳再造手术前后) 根据肋软骨耳再造. 这种手术的方法是年龄依赖性, ,因为肋软骨耳再造手术需要有足够的肋软骨形成耳, 一般是不可用的,直到孩子 6 或 7 岁. 一些软骨外科医生甚至更长的时间延迟重建, 直到孩子 10 岁, in order to have better projection of the ear. As a mother, 博士. 勒温了解到,在这些年龄段的儿童有时会在不知不觉中或故意不敏感的和残忍, 导致儿童先天性小耳畸形遇到的社会和心理方面的困难. 出于这个原因, 一个主要优势在于的Medpor手术的能力来完成重建 3 岁.

Medpor技术使用一个可定制的多孔聚乙烯植入物形成的耳朵,, 因此, 是没有年龄依赖性. Medpor的外科技术可以执行早 3 岁, 让您避免很多的揶揄,, 凝视, 和风险自尊,否则,你的孩子可能体验.

作为一个母亲和一个外科医生, 博士. 卢因​​颅面差异的心理影响儿童的深切关注. 她的经验对这些孩子,因为 2005 她认为,早期的耳再造手术可以, 大部份, 防止年龄较大的儿童所经历的负面心理影响. 在试图证明她的假设, 博士. 卢因, 随着她的同事们, 亚历克西斯约翰, 博士, 洛杉矶儿童医院的儿科心理学家, 和丹尼尔·我, BS (阿尔伯特·爱因斯坦医学院) started a long-term scientific research study in 2008. This study involves both a prospective and a retrospective comparison of psychological profiles of Dr. Lewin的患者治疗前,后的Medpor耳再造手术. 初步研究结果发表在美国心理协会 (圣地亚哥, 2010) 和美国的唇腭裂 - 颅面协会 (波多黎各, 2011). (阅读更多)

从病人的信

Grade 1 Microtia Ea下面这封信是从出生的耳朵显示在左边的绅士. 这是一个等级 1 小耳畸形外耳道闭锁, 耳朵是较小的和有点畸形比正常耳, 但仍具有可识别特征的螺旋轮辋, 耳垂和其它结构的. 他没有耳道和重度听力损失. 相对于同档次出生的孩子 3 先天性小耳畸形, 这似乎是一个较为温和的物理诊断.

当这个病人是个男孩, his parents took him to a prominent surgeon who did not recommend surgical repair as his condition was too mild to warrant surgery. From that point on, 没有进一步作出了努力,试图纠正这个病人的耳朵. 其实, he believed until this year that nothing could be done. When I met him for the first time, 他向我解释如何显着的不断增长了这款耳塞条件的问题是他, and how he felt it has affected nearly every aspect of his life in a significant way. Although he related to me, 作为他的妻子和, 他很少谈到他的耳朵, 是非常显着的先天性小耳畸形的心理因素.

下面这封信是由这名病人约 3 weeks after I took him to surgery to correct his Microtia. He did not require either Cartilage Rib Graft or Medpor, 而是一个复杂的重建和重新安排自己的耳朵的软骨.

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亲爱的医生. 卢因,

You asked me if I would write you a letter describing what it was like to grow up and live with microtia from birth to adulthood. I readily agreed in the hope that my experiences and views might be helpful to parents that have children with microtia and aid them in determining whether to repair the microtia.

第一, a little background. I am a man in my 40s, married with children. I was born with microtia which was not repaired until recently by you. My microtia was never repaired before because my parents did not know surgery was available and it was only a few months that I discovered that surgical repair was possible for me. 来形容我的感受,我的小耳畸形的最佳途径之一或许是为了响应一些的一些小耳畸形的儿童的父母.

孩子似乎与它的罚款,并且不关心. This seems to be a common refrain among parents of children with microtia. The truth is that at a very young age children don’t really care about things like physical differences and, 坦率地说, don’t know better. As they get older though, 他们不知道,它确实很重要.

I will say from my own experience that although as a young child I certainly knew of the microtia, 它并没有真正困扰我极大,直到我达到约 11 或 12. Part of this could be due to the different hairstyles of the time. I grew up in the 1970s and 1980s. In the 1970s, most males had longer hair and I was no exception. So to some extent it may have been out of sight, out of mind. While I knew I had the condition (有闭锁以及, 所以没有真正的听证会中,耳), 我不记得它的体重对我说,.

But I can still remember how it hit me like a thunderbolt when I was around 11. I went from basically not thinking about the microtia to thinking about it all the time. How much my ear bothered me only grew worse as I grew older. The 1980s came and men’s hairstyles started getting shorter, 但我觉得我不能去剪了头发短. This became a big deal in high school – a very big deal. I can recall one kid who would keep asking me why I didn’t cut my hair. I remember another kid saying that no one has ever seen my ears and so I need to “lift my hair”.

I cannot fully express how stressful living with microtia was and the constant anxiety of trying to make sure that no one saw my ear. I lived with the stress my whole life – 每天 until I had the surgery. One might think that a person would get used to it, but I never did. I spent my life trying to ensure that no one saw my ear. 这意味着,我站在一间客房, 我坐在一张桌子旁, 等. The pressure was tremendous. There was lots of fear too– fear of the unknown. That is, 如果有人看到我的耳朵,这一切意味着什么? What would the reaction be? Even when I was out of school and an adult in the business world, this was always in my thoughts. My work was impacted to the extent that I wasn’t fully focused when I was worrying about my ear. Any social situations, 如员工会议, 造成了极大的焦虑,因为我是如此的自我意识对我的耳朵.

所以,我要说,虽然一个非常年轻的孩子可能不关心, at some point they definitely will. They may learn to accept it (我从来没有), 但他们会关心他们的耳朵,几乎可以肯定被人打扰.

每个人都有一些不喜欢他们,他们. 这个评论似乎出现的背景下,“让我的孩子有先天性小耳畸形, plenty of people have something about them they wish they could change.” Some people have a big nose or are too short or too tall. Some people are slow or bad athletes. 是, 它是真实的, even a super model would likely change various things about their body. 但, 我认为差异不是程度上的区别, but a difference in kind. 例如, 可能不是最优的,而一个大鼻子, it’s common. People may not like it, but no one really thinks twice about it. The ear, 但, is different. Microtia is not common – it is a rare facial deformity. People aren’t used to seeing an ear that didn’t form properly. It draws negative attention in a way that a big nose does not. So yes, 而许多 (最?) 人自己的事情,他们可能要改变, there is a difference between the usual and the unusual. All of us, 特别是儿童, 要适应下来,并且正常.

没有人通知, 如果他们这样做, 他们不关心. This is easy for someone without microtia to assume. Certainly people do notice the microtia. Do they care? I don’t know. What I do know is that I spent my whole life trying to hide my ear for fear that someone would see it and feel negatively towards me.

结论. 尽管我的小耳畸形, I have lived a full and enjoyable life. I have a great family and a successful career. But I know too that it was always with me and made my life more stressful than it needed to be.

It is not for me to tell parents of kids with microtia that they should or shouldn’t fix their child’s ear. I wouldn’t presume to do that. Each parent has to decide what they believe is best for their child. I am just sharing my life story. I am a parent too. 幸运的是我的孩子不是天生的条件, 但是,如果他们有先天性小耳畸形, I would have chosen surgery for them without hesitation. I would do so in the hope of sparing them the stress and hardship that I endured until my recent surgery. Since I had my microtia repaired I have never felt so free and relaxed in social settings like restaurants. I am much less self-conscious and it feels as if a weight has been lifted from me.

我想补充一点,如果家长选择去与维修, that I think you are a tremendously talented and creative surgeon. I discovered that this type of surgery is not like others that can always be done “by the book”. You are able to work with the uncertainty of the reconstruction or procedure in order to achieve the best result possible. More than that, you are a wonderful and caring person who always made me feel comfortable with the process. If you could do this with my curmudgeonly self, I just think with amazement of what you could do for a child. I should note too that I say these things of my own free will. I was not paid, 我也没有承诺以任何方式我的胳膊拧! My hope is that sharing my own experience will help other families with microtia.

亲切的问候,
病人


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