Patient Stories - Wen’s Story

患者故事-雯的故事

患者故事

我第一次见到我的女儿的时候是2003年10月10日。她当时5个月大并且住在中国一个收容所里。和我一起通行的还有一个医疗团队帮我寻找一些我们可以帮助的儿童。Wen是一个非常漂亮的孩子除了一个看上去不是很健康的耳朵当时的她只在收容所里住了两个月。我当时就喜欢上了她但是还是不舍的离开了。当时我们什么也帮不了她。我们不知道她是否能听见，哪怕是一点点，但是我们在那个收容所里什么都做不了。另外还有两个孩子有相识情况。我不知道这种疾病叫什么，但是现在这个词成了我人生的一部分。三个月后我又见到了wen并且她的情况更糟了。她日渐消瘦，皮肤看起来很糟糕。她仍然非常漂亮，但是她眼睛里已经不再有神并且在见到他的时候我哭了，这样一个漂亮的小姑娘为什么生长在收容所难道就因为她的小耳朵。至少我有一点可以做到就是让她从收容所出来。在和我先生商榷之后，三个月后把她接出来。我把她从收养所接出来和我们一起住了三个月，之后我收养了她。我们带着她见了一个儿科医生诊断她为先天性耳道闭锁和外耳畸形。然后我开始查找如何能帮到她。我们去了中国当地的耳鼻喉医院并且被告知她的右耳很好但是对于左耳他们什么都做不了。但是我上网查找，我了解到那不是真的。只是在中国我们没有什么办法能帮助这个女孩。

我很快在雅虎上找到一群孩子是患有先天性耳道闭锁和外耳畸形的家长并且知道了在美国有专门的医生治疗这种疾病。我们还是需要等。因为wen的收养手续还没有齐全所以我们还不能带她去美国看任何这方面的专家。在手续办完之后我们带她见了几位主刀医生还是不确定我们能做什么。我们知道有很多决定要做但是我们还是要等孩子到达适合手术的年龄以后才行。在这期间，她的收养所联系到我们说，有另外一个刚收容进来的小姑娘也有同样的问题，为我们还能再收养一个吗！我们同意了，我们能为一个孩子这么做，我们就能为两个孩子这么做。

刚刚过去的十月，我带着我两个女儿去参加加州耳科研究所组织的关于先天性耳道闭锁和外耳畸形的研讨会。在那里我们了解到了我们在面对什么样的问题但是更重要的是我们见了不同的医生来听取他们的意见，什么治疗方案将会对我的孩子最好。那一天我们见到了Dr. Roberson和Dr.Reinisch，并且确定这两个医生将是我们可以相信的医生。

我们回到家里并且开始为Wen的耳道修复手术和外耳重建手术做准备。一切都进行的很好直到我们联系到我们的保险公司来报销我们这次旅行的开销。对于一个美国保险公司这个要求不是很常见的。我们如果想报销这次旅行的花费我们被要求去最近的机构-在香港。但是香港的治疗是将耳朵去除然后带上一个假体和助听器。我们找到Sheri Byrne希望她能通过Let Them Hear Foundation。在她的帮助下我们不需要去那个机构，她可以帮助我们告诉保险公司听力恢复是最终的目的。保险公司同意将报销我们这次去新加坡做耳道重建手术的花销。这对于我们来说是可以接受的-所以他们帮我们支付了飞机票，我们之后来到了加州！

几天后我们回到家里并且Aisling（wen）非常好。她非常喜欢她的新耳洞！她每天都查看并且试着悄悄对耳洞说话，看是否能听到！她根本就不知道如何说悄悄话并且Aisling的中耳骨虽然在但是因为离的太远而不能修复。在她恢复之后我们对她的听力进行了测试，但是我们觉得她还是应该接受中耳骨假体移植手术通过一个钛合金假体连接，这是由Dr. Roberson发明并应用的。如果不这做这个手术，新建的耳道和耳鼓也会给她恢复听力提供更多的选择。Aisling看起来非常担心这个手术但是同样我们让她知道她也可以拥有像妈妈一样的大耳朵。在我们接受手术这段时间，医院的每一个人都把我们照顾的很好。Aisling从来没有因为疼而哭过也没有害怕。对医务人员来讲这一点是非常难做到的！只有一次让她觉得伤心的是她想她的哥哥和姐姐了。她同样也非常疑惑为什么不能带hannah一起来治疗耳朵！我们告诉她不要担心，当Hannah和她一样大的时候我们就会带她来做一个新耳洞！Aisling说：“我会告诉她要像我一样坚强。”

我们同CEI和LTHF的羁绊没有再此停止。我的丈夫和我帮助收容所的儿童得到特殊的帮助。通过几次合作，他们教会了我们想收容所的孩子提供诊断和提供意见。

非常感谢加州耳科研究所和LTHF。感谢你们！非常感谢你们对

 

 

Patient Story

I first met my daughter on October 10, 2003.  She was 5 months old and living in an orphanage in China.  I was there with a medical team looking for children that we could help.  Wen (Aisling) was a gorgeous and engaging child who except for a deformed ear appeared very healthy given that fact that she had spent the previous two months in an orphanage.  I fell in love with her that day but left saddened.  There was nothing we could do to help her.  We didn’t know if she could hear, though we suspected she could at least a little, but there weren’t any treatment options available to her in a Chinese orphanage. There were two other children there who had similar deformities.  I did not know what the deformity was called then, but that was my first encounter with a word and condition that is now a part of my life every day.  I saw Wen three months later and saw her condition had worsened.  She was withdrawn, losing weight and her skin looked horrible.  She was still gorgeous, but she was losing that spark in her eye and I cried over her thinking that this precious child would have to grow up in an orphanage just because her ear was little.  But there was little I could do unless I could get her out.  After convincing my husband, three months later I did just that.  I took her out of the orphanage and brought her home to live with me and we later adopted her.  We brought her to a western pediatrician who correctly diagnosed her condition as aural atresia and microtia.  It was then that I began my search for how to help her.  Living in China our options were limited, but we brought her to the local ENT hospital where we were told that her right ear was fine and that nothing could be done with the left. Searching online to find out more information, I found that not to be true.  There was just nothing we could do in China.

I soon found a Yahoo group for parents with children with atresia and microtia and there learned about doctors in the US who specialized in dealing with this.  We still had to wait though.  Since Wen’s adoption wasn’t finalized, I couldn’t bring her to the US to be seen by any of these surgeons.  After her adoption was finalized, we brought her to a few surgeons and still felt uncertain about what we would do.  There were choices and decisions to be made, but we still had some time until Aisling was old enough for any surgeries.  In the meantime, her orphanage contacted us to tell us that they had another little girl who had the same condition and would we be willing to take her home too!  We agreed knowing that what we could do for one child we could do for two.

This past October, I brought both of my girls to California Ear Institute for their conference on Microtia and Atresia.  There we learned quite a bit about what we were facing and our options, but most importantly, we got to meet and speak with the different doctors about MY children and what would be the best options for each of them.  I knew that day of all that I read about and the all doctors that I’d met, that Drs. Roberson and Reinisch would be who I would entrust my girls’ care to.

We went back home and began to make the arrangements for when we would return to the states for Aisling’s atresia repair and Medpor outer ear reconstruction.  Everything was going smoothly until we contacted our insurance company about reimbursement for our travel costs.  We have an American insurance policy for foreignersso this was not an unusual request.  Our policy, however, requires that we go to the nearest facility if travel is to be reimbursed – which they said would be Hong Kong.  However, the approach to correcting atresia and microtia in Hong Kong was to remove the ear, create a prosthetic and use a hearing aid.  We asked for help from Sheri Byrne with the Advocacy Program of Let Them Hear Foundation.  With her help and without having to resort to a formal appeal, she was able to help the insurance company recognize that a restoration of hearing was a realistic goal.  The insurance company agreed to cover the cost of travel to the nearest facility where atresia repairs were performed, which was Singapore.  That was acceptable to us – so they reimbursed that portion of the tickets and we headed off to California!

We just returned a few days ago and Aisling is doing great.  She just loves that she has a new hole!!  She looks at it everyday and tries to whistle to see if she can hear it!  She doesn’t know how to whistle though…  Aisling’s middle ear bones are present but spaced too far apart for them to be able to repair.  After she heals and we recheck her hearing, she may be a candidate to have her middle ear bones replaced with a titanium prosthesis, designed and developed by Dr. Roberson.  If not, having an ear canal and eardrum now creates more options for assisted hearing for her.  Aisling is a bit worried about more surgery, but we have focused all along on the positive aspects of it and she is looking forward to getting her “big ear, just like Mommy’s”.  During the time we were in California for her surgery, everyone was just fabulous and they took great care of us.  Aisling never cried from pain and was never scared.  That’s a pretty amazing staff to pull that off!!  The only time she was upset was after several days and that was because she missed her big brother and little sister.  She was also confused why we couldn’t bring Hannah to get her ear repaired too!  We told her not to worry – we’d come back when Hannah was a big girl like her to get her a new hole!  To which Aisling said, “then I will tell her to be brave too!”

Our experience with CEI and LTHF doesn’t end there, though.  My husband and I work helping access healthcare for Chinese orphans and children with special needs.  On several occasions, their team has helped us in diagnosing and advising on treatment options for children living in orphanages in China.

Thank you to all the team of California Ear Institute and Let Them Hear Foundation.  You are wonderful!  My family is very grateful for all you have done to help us!