Patient Stories - 杰克的故事

患者的经历-Jack的故事

Sonja 描述了她在中国儿童收容所所看到的景象，最触动她的是当她看到收容所一个床上的女孩，她看到了只出生几个月的女孩稚嫩的脸和眼神。她知道这里的孩子将不会拥有一个正常家庭所给予的爱和安全。

那是Sonja到中国的第一次旅行，Jaden永久的成为了她这个家庭里的一员。

Chris and Sonja在决定收养Jaden的时候已经有了两个孩子。当描述在有两个孩子的情况下收养第三个孩子决定时，Sonja说“这是命运。我们知道我们会这么做。”

Sonja知道Jaden在中国需要一些牵绊，一些有血缘关系的人。十八个月后她开始进行办理第二次收养手续。

当Sonja和他的丈夫在填写一些表格的时候，Sonja注意到这个他们要收养的孩子可能会有“特殊的需求”。当收养孩子的家庭看到这个部分的时候会被告知他们将要收养的孩子在某种程度上需要“特殊的帮助”。当他们在填表的时候有一种力量让他们选择了“特殊的需求”这一项。

在两个星期内他们把这些手续给了他们收养孩子的中介，然后他们收到了一个患有双侧先天性耳道闭锁和外耳畸形的男孩照片。信中解释到这个收养所的工作人员认为Jack有部分听力丧失，解释为什么会有部分听力丧失。Chris和Sonja对先天性耳道闭锁和外耳畸形都不熟悉，所以他们马上上网查询最后了解到了这个病情。

他们开始了一个大工程就是让自己了解孩子的情况。他们查找的资料将他们引向Dr. Roberson的耳道修复手术和Dr. Reinisch的外耳Medpor重建手术。他们在雅虎上找到了一个团队对孩子的情况进行了分析。就像Sonja说的一样“我们做了功课。”

Sonja一家住在加州的sacramento市，但是从来没有听说过先天性耳道闭锁和外耳畸形。她只知道她女儿的一个朋友生了一个失聪的孩子。在这种情况下她找到了这个妈妈并说明了情况。这个妈妈非常愿意帮助Sonja的境况，并告诉他他的孩子植入了一个人工耳蜗，手术是Dr.Roberson亲自做的。而恰恰是这一点点的信息鼓励他们带着孩子继续向前走。

2006年11月20日正式成为家庭的医院，仅仅在申请后的9个月。对于那些通过国际中介机构收养孩子的人会觉得为什么Jack的收养过程那么快。原因是：只有很少一部分家庭愿意收养有特殊需要的孩子。这些孩子需要更多的关心和关注，在收容所能够提供的照顾总是捉襟见肘。而残疾孩子在收容所能够被领养又是非常幸运的，大部分有残疾的孩子的不幸会跟随一生成为最后的受害者。

Sonja认为孩子在收容所的那两年得到了他能够得到的最好的照顾。同时在领养之后也发现Jack无疑是有营养不良，而且先天性耳道闭锁和外耳畸形没有得到医治。

Sonja回忆说刚开始那几个月的交流非常困难。Jack生活在接近于无声的世界中，他找不到比哭更好的方法来吸引人的注意。

在从中国回来的三个星期后，加州耳科研究所（CEI）的医生为Jack做了第一次听力测试，用来确认他的耳蜗和听神经是否正常工作从而确认Jack适不适合接受手术。

“他们为Jack做了骨导听力测试。他坐在了我的腿上，他的头上带着一个震动的绑带仪器。当他第一次听到声音的时候他马上侧过来看着我，我差点就哭了。我不认为自己是一个容易感动的人，但是上天总是眷顾那些祷告的人，这一幕触动了我的心灵”Sonja在日记中这样写到。

在CEI第一次就诊后，Jack佩戴了巴哈助听器，我们在家和在幼儿园为Jack安排了特殊的早期语言培训。Sonja早在Jack还没有到美国的时候就和当地的学校沟通，并允许当Jack刚到美国的时候就可以接受治疗。在接受治疗佩戴BAHA助听器的第一个星期，Jack的语言，理解和词汇量都得到了前所未有的发展。

好消息在2007年2月传来，通过观察CT片Dr. Roberson认为Jack是可以接受手术治疗的。Jack正在适应他的新家和学校，并同语言学家每周沟通，他们已经为Jack的手术做准备了。

Jack将会是第一个接受合并耳道修复和外耳重建手术的患者。他右耳的手术是在2008年1月18日。

近10个小时的手术进行的非常顺利。Dr. Roberson和Dr. Reinisch都非常高兴这个手术能在晚上之前做完，Jack和家人回到了酒店。两天的时间Jack就想往常一样，玩自拍。在接下来的几个星期，Jack一直都在和医生保持必要的联系并复诊，之后便通过邮件向医生报告Jack的恢复情况，并提到了如何让一个三岁的孩子不能跑，跳。三个星期后，Jack回到了幼儿园。

在Jack恢复的时间手术对他听力的影响变得非常显而易见。在Sonja的博客中这样写到手术后四个星期都要会到CEI进行术后护理。

“Jack从CEI诊所出来以后，正好一辆大卡车在草丛后面的路上经过。Jack马上通过声音判断出卡车的位置尽管他并不能看见卡车。通过声音来辨别声音的来源对于Jack来说一直都是一件不可能的事，但是这次让我亲眼目睹了他的改变。

在Sonja的博客上www.missionlittlebrother.blogspot.com， Sonja同样分享了更多让她激动的时刻，比如Jack可以用他重建的耳朵在没有骨传导设备的帮助下和我通电话并且在手术后第一次听力测试中显示Jack的听力是在20分贝。在没有其他孩子的照顾并且Sonja和Chris都有了全职的工作，并且决定进行下一步四个月后为Jack做左耳的手术。

第二个合并手术是在2008年5月。Jack右侧的中耳骨发育的没有左耳那么好但是手术进行的很顺利并且达到了医生最好的预期效果。Sonja描述了整个第二次手术的过程但是却没有那么担心，并且知道他们有了期待。

他们选择将记录在两次合并手术后的这几个月的整个恢复过程。在6月8日的博客中，Sonja写到：“我想在两年前，我们第一次见到Jack的资料。他是在世界另一头的收养所里。如果他待在哪里，我们就不会享受到这个小男孩给我们带来的乐趣…他每天都笑着，并真诚的拥抱我们。他将不会听到树林里发出沙沙的声音，不会听到小溪流淌的声音也不会说任何一个字。我认为已经有一个军队的人来帮助Jack去听到去说-和他的ABC！我非常感谢每一个曾经帮助过我们走过来的人。Jack学会了很多并教会我们很多-他就是为和我们在一起而生的。

对于一个患有先天性耳道闭锁的患者来说，一个耳道修复就能解决所有的问题是一个误区。孩子的听力恢复过程是非常重要的，有很多重要的因素将在接下来的几年中影响手术的成果。一个医疗团队，听力医生，语言发育医生，家长和学校都将对孩子今后的听力恢复取得决定性的作用。开来他们都有。

对于Jack来说，在2008合并手术以后，每天都要接受语言练习，说话联系和与人沟通，后续的手术将离不开保险公司和学校最大限度的合作。在学校根据Jack的需要，Jack被认为在听力上有困难需要特别的帮助，比如一个在教室需要安装扩音系统并给予语言上的帮助，进过Jack的测试要高于听力障碍人群。

近年来，杰克已经被确诊为语用语言延迟和前庭处理障碍，可能与前几年的孤儿院没有刺激有关。在家人和学校的合作之下，他们将持续的为Jack提供需要的学习环境 。他将继续每个星期接受语言方面的治疗，接受学校为他准备的Ponto和FM助听系统。

Jack的学习生活正在走向正轨。Jack是一个学习非常好的孩子并且在2年级的时候发现自己喜欢阅读。Sonja是这样描述他的孩子的“他从来不会因为任何事情不高兴，经常微笑并高兴，有激情并且非常的友善和照顾他人。Jack一直在主流班级里，Sonja确定Jack并不想被人看扁：“低一级的班也许对他来说检点一些，但是降级绝对不是他想要的。”

Jack的老师通过向他的父母分享他在过去一年里作为Jack的老师却从Jack身上学到了许多很多来证明Jack是一个多么积极向上的一个人。认识Jack的人都知道这个八岁的男孩给了他所接触过所有的人一个积极向上的生活状态。

在过去的几个月中Jack一直问妈妈为什么他的前腹部会有一个疤痕，妈妈告诉他这是医生在为他做耳朵时取皮的地方。Jack觉得这是他听过最难以置信的事情，因为他完全不记得手术之前的事情。

对于Jack来说，他可能永远不会了解到这一路走来所经历的希望，爱和听力的恢复，但是他的故事将永远鼓励更多的人，谢谢这对夫妻对孩子无条件的爱和让Jack成为他们的孩子。领养一个患有先天性耳道闭锁和外耳畸形的孩子不是一件容易的事，但是当你有这样的机会看到或者听到像Jack这样的故事，你可以想象这么多的努力一路走来是非常值得的！

 

 

Sonja described one of the most moving moments of her life as she looked upon the faces and into the eyes of numerous children in cribs at an orphanage in China, the orphanage where a little girl (soon-to-be daughter) was being cared for during the first several months of her life.   She was taken back with emotion, realizing that that these little faces were growing up without the love and safety that a family provides.

That was Sonja’s first trip to China, when Chris and Sonja’s daughter, Jaden, would become part of their family forever.

Chris and Sonja had two biological children prior to making the decision to adopt Jaden.  Describing the motives behind their decision to adopt after having two biological children, Sonja simply says, “It’s a calling.  Something we always knew we were meant to do.”

Sonja knew that she would want Jaden to have a sibling from China, someone that she could relate to.  Within 18 months they began the adoption process for the second time.

As Sonja and her husband worked to complete all the paperwork and questionnaires that come along with entering into adoption process, Sonja felt compelled to look into the possibility of adopting a “special needs” child.  Families choosing this option are asked to select what sort of “special needs” they would be willing to consider adopting a child with.   As they were making their selections, they came across the option of checking the box that read “Partial hearing loss. Example: deaf in one ear.”  This box was one of the many that they felt led to select that day.

Within two weeks of sending the questionnaire back into their adoption agency, they received a photo and biography of a young boy with bilateral atresia and microtia. The letter explained that the workers in the orphanage thought Jack had some degree of hearing, explaining why he was categorized as “partial hearing loss.”  Chris and Sonja were not familiar with atresia and microtia and immediately began the Internet search to find out exactly what these terms meant.

They began the great task of becoming educated on this boy’s condition.  Their search quickly directed them to information on Dr. Roberson’s work with canalplasty and Dr. Reinisch’s work with the Medpor.  They found a Yahoo group that helped explain some of the conditions that are associated with atresia and microtia.  As Sonja said, “we did our homework.”

Living close to Sacramento, CA, Sonja had never encountered anyone with atresia and microtia.  She did know a mom of one of her daughter’s friends who was born deaf.  In a casual run-in with this woman, Sonja chose to bring up in their conversation the little boy in China and his hearing impairment.  She was very willing to share her story and help Sonja understand more about the impact of hearing loss.  She spoke about the impact medical technology have had on her life, which in her case had been cochlear implant surgically placed by Dr. Roberson himself.  Little things like this along the way provided Chris and Sonja with encouragement to take the step of faith and pursue making this little boy with atresia part of their family forever.

Jack’s “gotcha day” was November 20, 2006, just a short 9 months from start to completion of the process.  Those familiar with international adoption can appreciate how incredibly quick Jack’s adoption process was.  The reality: few people are willing to adopt a child that has been labeled as “special needs.”  This coupled with the need for increased care and attention that comes with certain conditions can burden care providers in centers caring for orphaned children, places that are almost always overstretched and under resourced to begin with.   In many countries, special needs children who have the opportunity to be cared for in orphanages are the fortunate ones, as tragically many are abandoned and left as a victim of their disability.

Sonja believes her son received the best care his environment allowed for in his first two years of life in the orphanage.  At the time of his adoption though, he was undoubtedly malnourished, developmentally under-stimulated and his atresia and microtia had not been addressed.

Sonja reflects back on how hard communication was during those early months. Living nearly in silence his entire life, Jack had no concept that he could get the attention of others by means other than crying.

It was within three weeks of their return from China, that the staff at the California Ear Institute (CEI) was introduced to Jack for the first time.  During his first visit, audiological tests were performed to determine the function of the cochlea and hearing nerve, a key component to helping determining whether or not Jack would be a candidate for surgery.

“They performed a bone conduction hearing test on Jack. He sat in my lap in a little booth with a device attached to his head that vibrated sounds on his skull. He turned immediately when the first sound was made and I nearly cried. I don’t consider myself to usually be a very emotional person, but God has answered some prayers and it touched my heart to see Jack hear so clearly,” Sonja wrote about that day.

Shortly after his first visit at CEI, Jack was fitted with a soft band BAHA device and intensive speech therapy was arranged in the home and at the preschool Jack would attend, all services provided by the school district’s early intervention program.  Sonja had made early connections with their local school, even prior to Jack’s arrival, that allowed for therapy to begin soon after his arrival to the US.  A tremendous amount of progress was made in the initial weeks of using a BAHA, as his receptive language, understanding and vocabulary rapidly began to develop.

It was February of 2007 when Dr. Roberson was able to deliver the good news that Jack’s CT scan revealed he was a candidate for canal surgery.  As Jack continued to adjust to his new home and school, working with speech and language pathologists several hours each week, they began the planning for Jack’s surgeries.

Jack would be the first patient to ever undergo a surgery combining atresia repair and Medpor microtia reconstruction in the same surgery (referred to as a CAM procedure).  Jack’s first surgery was performed on the right ear January 18, 2008.

The nearly 10-hour procedure went very well.  Dr. Roberson and Dr. Reinisch were very pleased with how everything had gone and by the end of the evening, Jack headed back to the hotel with his family.  It took just two days until Jack was back to his fun, playful self.  The preceding weeks would be filled with post op appointments, photo emails from home to ensure the healing process was coming along as it should and attempts at convincing a little three year old why he can’t run, jump or play rambunctiously while his ear was healing.  Three weeks after surgery, Jack was back in preschool.

The impact of Jack’s surgery on his ability to hear became evident very early in the recovery process.  As documented in her blog, Sonja recalls being outside of the CEI office following a post op checkup nearly four week out from surgery.

“We went outside, a large truck was driving by the office behind some bushes.  Jack located the sound of the truck immediately and tracked it as it passed the office even though it was behind the bushes. Sound localization has been a huge struggle for Jack and that was really just incredible to witness.”

On her blog, www.missionlittlebrother.blogspot.com, Sonja shares other exciting moments such as when Jack was able to talk with her over the phone for the first time using his reconstructed ear and no bone conduction device and first hearing test after surgery that showed his hearing in the 20dB range.  While by no means an easy or short road, not to mention three other kids to care for and full time jobs for Sonja and Chris in the mix, the they signed up for round two on Jack’s left ear, just four months from the original surgery.

His second CAM surgery took place in May 2008.  Jack’s right middle ear bones were not as well formed as the left had been but the surgery had gone smoothly and doctors were hoping for the best.  Sonja describes the entire process as being less worrisome the second time around, now that they knew what to expect.

They chose to continue to put their circumstances in perspective as months of being in the recovery process from two CAM surgeries built.  On a June 8 blog entry, Sonja wrote:

“I was thinking that about two years ago, we first saw Jack’s file. He was in an orphanage on the other side of the world. Had he stayed there, we would never have experienced the joy of this little boy… seen his smile every day, felt his sincere hugs. He would likely never hear leaves rustle in the forest, never heard water run from a faucet and may have never spoken a word. I think it has taken a small army of helpers for Jack to hear and to speak – to be able to say his ABC’s! My gratitude runs deep for everyone who has supported us on this fantastic journey. Jack has learned a lot and taught us a lot – he was meant to be with us.”

For one to think that challenges associated with the hearing deficits experienced in children with atresia are eliminated with the surgical correction of atresia, this would certainly be a mistake.  While hearing restoration is a significant, key factor in the treatment for atresia, a collaborative effort is needed in the following months and years.  A team of doctors, audiologists, speech and language pathologists, developmental specialists, teachers and family members willing to commit to a child’s development and future are key factors for them achieving maximum outcomes.  They certainly have had this.

In Jack’s case, the years following the original CAM surgeries in 2008 have included speech, language and occupational therapies as part of the normal routine, revision surgery and time spent working closely with the insurance companies and the school district to maximize Jack’s experience at school.  At the advice of a speech therapist early on, having Jack labeled “Hard of Hearing” allowed for him to receive special assistance from the district, such as an FM system in the classroom and continued speech and language therapy, though technically his scores were well above the range that would normally qualify a child for assistance.

In recent years, Jack has been diagnosed with a pragmatic language delay and vestibular processing disorder, likely related to the first several years spent in the orphanage without stimulation.  In granting attention to those areas in therapy and the incredible coordination between his family and teachers, they continually are able to maximize Jack’s learning environment.  He continues speech and occupational therapy one time per week and receives hearing assistance with Ponto’s and an FM system while at school.

Jack is thriving in school and life.  He is a straight A kid and finds himself in the 80th percentile for reading as a 2nd grader.  Sonja describes Jack as the “the most joyful kid.”  He doesn’t dwell on differences.  He is always smiling, very happy, empathetic, extremely friendly and caring.  As Jack is in all mainstream classes, Sonja makes certain that the bar is never lowered for her son: “His path to get there may be a little windy, but lowering the bar will never serve him well.”

A testament to Jack’s character and sweet spirit, his teacher this past year shared with the their family how she had learned a tremendous amount from Jack in being his teacher.  It seems to be the general consensus by all who know this 8-year-old boy that he gives far more than he takes and touches everyone in a positive way.

 

In the past several months, Jack asked his mom where the scars on his stomach had come from.  Sonja told him that it was where the doctors had taken the skin to help make his ears.  Jack thought that was the strangest thing he has ever heard!  He has no memory of the surgeries or life before ears.

Jack may never understand the great lengths that so many have gone to provide a future full of hope, love and hearing for him but there is an incredible story being written with his life, one that we have had the privilege to enter into, thanks to the unconditional love and dedication of a father and mother that chose to make Jack their son.  Adoption, atresia and microtia all come with some very real challenges, but when you have the opportunity to see and hear a story like Jack’s, you can’t help but think that the struggles that come along the journey are completely worth it!