怀孕34周的吕元芳脚部有浮肿，丈夫罗忠木在为妻子按摩脚。来京产子的首位渐冻人吕元芳面临困境。实习生 徐洋 摄

34 weeks of pregnancy LvYuanFang swelling in the foot,Her husband for his wife LuoZhongMu in foot massage.Beijing's first litters of gradual freezing LvYuanFang faced with a difficult situation.Interns XuYang perturbation

　　新京报讯 （记者易方兴 王卡拉）国内首位怀孕的“渐冻人”吕元芳，从甘肃老家来京产子遭遇危机。一家本来同意免费做剖腹产手术的妇产专科医院，对吕元芳做完身体检查后称，“专科医院条件不够，没有呼吸科和神经科相关专家，建议吕元芳转院”。

The Beijing news - (Reporter YiFangXing king Carla)The domestic first pregnant"Gradually freezing"LvYuanFang,Gansu province to Beijing from home with such crisis.A have agreed to free do caesarean operation of maternity hospitals,To finish LvYuanFang body examination says,"Specialized subject hospital condition is not enough,No respiratory medicine and neurology relevant experts,LvYuanFang advice to a hospital".

　　目前，吕元芳离最佳手术时间只剩两周时间。

At present,LvYuanFang from the best operation time there are only two weeks.

　　

首位怀孕的渐冻人 The first pregnant gradually freezing

　　昨日下午，朝阳区柳芳北街附近一间出租平房内，吕元芳躺在床上，怀孕34周多的她肚子圆鼓鼓，“快撑不住了，每吸一口气都很艰难”。

Yesterday afternoon,North street, chaoyang district, liu fang near a rent in the house,LvYuanFang lying in bed,34 weeks' gestation much she's bulging,"Fast could not support the,Every breath is very difficult".

　　31岁的吕元芳从小患脊髓型肌萎缩症。这种患者全身肌肉逐渐萎缩，如同被逐渐冻住一样，被称为“渐冻人”。2011年5月，吕元芳与丈夫罗忠木结婚，并在一年后怀孕，成为全国首个怀孕的渐冻人。

31 years old from LvYuanFang with myelopathic type cervical muscle atrophy.This patient muscles gradually atrophic,As was gradually as frozen,called"Gradually freezing".In May 2011,LvYuanFang LuoZhongMu married with her husband,And in a year later pregnancy,Become the first pregnant gradually freezing.

　　渐冻人生孩子风险太大，医生不建议要孩子。吕元芳希望能把孩子生下来，“丈夫这么照顾我，等我走了，想有个孩子以后给他养老。”

Children gradually frozen life risk is too big,Doctors do not recommend to have children.LvYuanFang hope to put the child was born,"So take care of my husband,Until I go,Want to have a child later gave him endowment."

　　2012年9月，吕元芳曾到医院进行检查，结果显示，胎儿发育一切正常。

In September 2012,LvYuanFang have ever been to a hospital for evaluation,The results show,All normal fetal development.

　　

医院出尔反尔？ Hospital back and fill?

　　一脸发愁的罗忠木正给妻子吕元芳按摩脚，“上个月来的时候，有一家北京的专科医院承诺免除我们检查和手术费用，我觉得老婆和孩子有希望了，没想到现在又不让我们在医院手术了。”

A face of worry is the LuoZhongMu to the wife LvYuanFang a foot massage,"When last month,There is a Beijing specialty hospital promised to forgive our inspection and operation cost,I think his wife and children have hope,That now and don't let us in the hospital surgery."

　　这家医院是湖北一家电视台联系的，该电视台的一名编导表示，当时医院说可以为吕元芳免费检查，如果符合手术条件，医院免费进行手术。电视台承担吕元芳夫妇在京租房和往返交通费用。

The hospital is a television station in hubei province,The television station of a director said,At that time the hospital said can be LvYuanFang free inspection,If accord with operation conditions,Hospital surgery for free.Television stations in Beijing for LvYuanFang couple renting a house and return the cost of transport.

　　“检查到现在，还剩两个星期就是原定做手术的日子了，医院让我们找别的医院。我们一没钱，二不认识人，去哪里找啊？”吕元芳说，她和丈夫都没有工作，两人在北京几乎花光了积蓄。

"Check up to now,The remaining two weeks is scheduled for surgery of day,The hospital let us find other hospitals.We have no money,2 don't know people,Where to find ah?"LvYuanFang said,She and her husband are out of work,Two people in Beijing almost spent savings.

　

　“实在不具备条件” "Really do not have a condition"

　　“我们医院真的不是心疼钱，手术费住院费我们都承担得起，只是开始把这个病想得太简单了。当初电视台找到我，我也是想办一件好事，就答应下来，但检查之后，发现我们医院没有条件做渐冻人的剖腹产手术。”昨日，这家专科医院的负责人说，他们医院承担了吕元芳进行产前检查和调理的全部费用，“但做全国首例渐冻人手术，我们实在是不具备条件。”

"Our hospital is not really love money,Operation hospitalization expenses we afford,Just began to make the disease to be too simple.At the beginning I find television,I also want to do a good thing,Promise down,But after check,We found that the hospital did not do it gradually frozen the caesarean operation."yesterday,This specialized subject hospital officials said,They take the hospital LvYuanFang for prenatal care and the cost of the whole,"But do the country's first gradually freezing operation,We are really do not have a condition."

　　该负责人表示，他们医院既没有大型呼吸机，也没有呼吸科和神经科方面的专家，没法做这个手术，“本着对生命负责的原则，我们才建议吕元芳转院。如果北京真的没有医院愿意接收吕元芳了，我们依然可以为吕元芳做手术，只是风险太大了。”

This person in charge said,They neither large hospital breathing machine,No respiratory medicine and neurology expert,Can't do this operation,"In line with the principle of responsible for the life,We don't suggest LvYuanFang hospital.If Beijing really not willing to receive the LvYuanFang hospital,We can still LvYuanFang for surgery,But the risk is too big."

　　■ 专家说法

S experts saying

　

　“渐冻症”专家 渐冻人生产非常危险 "Gradually frozen disease"Experts gradually freezing production is very dangerous

　　昨日，中国医师协会“融化渐冻的心”公益项目办公室副主任黄敏，听说吕元芳的情况后表示，对于渐冻症患者来说，“怀孕生产是非常危险的事情”。

yesterday,The association"Melt gradually frozen heart"Deputy director of the office of the public welfare projects HuangMin,Heard that LvYuanFang the said,To gradually frozen for patients with disease,"Pregnant production is very dangerous things".

　　“渐冻症是有遗传倾向的，这些病人一旦被诊断为这个疾病，专家会建议他们不要考虑生孩子，因为生出来的孩子很有可能还会得渐冻症。尤其是有家族发病史的，孩子发病的几率几乎是百分之百。”黄敏说。

"Gradually frozen syndrome is a genetic tendency,Once these patients were diagnosed with the disease,Experts will suggest that they do not consider children,Because born child is very likely will have to gradually frozen disorder.Especially a family history of hair,The chance of children is almost one hundred percent."HuangMin said.

　　黄敏表示，她很担忧吕元芳现在所面临的处境，怕她会闯不过这一关。因为对于渐冻症患者来说，其病程发展过程中本身就会出现呼吸衰竭的问题，因此手术风险很大。

HuangMin said,She worried that the situation of the LvYuanFang now,Afraid she'll rush but this close.Because for gradually frozen for patients with disease,The course of disease development process itself will appear respiratory failure problem,So the operation risk is very big.

　

　妇产科专家 若呼吸困难无法麻醉 Department of gynaecology and obstetrics experts if breathing difficulty in anesthesia

　　宣武医院妇产科主任王凤英表示，吕元芳现在面临的问题并不是妇产科能解决的。虽然产科能对产妇在生产过程中出现的合并症进行处理，但关键是她的原发病到底是什么情况妇产科医生不了解，“我没有听说过渐冻症。”

Xuanwu hospital, director of the department of gynaecology and obstetrics Tate DJ said,LvYuanFang are now facing the problem of not department of gynaecology and obstetrics can solve.Although maternity to maternity in the process of production of complications in process,But the point is that her the primary disease what situation in the department of obstetrics and gynecology doctors don't know,"I never heard of gradually frozen disorder."

　　王凤英说，吕元芳现在遇到的关键问题不是找哪家医院进行剖腹产的问题，剖腹产手术是很小的手术，但患者如果有呼吸困难的情况，可能连剖腹产手术都做不了，无法在术前进行麻醉。“她必须面对，现在呼吸不好，如果再进行麻醉，人没了怎么办？对于医生来说，两个生命同等重要，不像电视里说的那样，说保谁就保谁的问题。”

Tate DJ said,LvYuanFang met this key problem is not to find a hospital for the problem of cesarean section,Caesarean operation is small operation,But if patients have trouble breathing,May even caesarean operation can do,Not in preoperative anesthesia."She must face,Now breathe in bad,If further anesthesia,People didn't how to do?For physicians,Two life equally important,Don't like television said that,The who says the who question."

　　神经科专家 生产须神内医生参与 Psychiatrists must participate in the production pharmaceutiacal market

　　武警总医院神经内科主任吴士文认为，根据病历吕元芳患的是脊髓性肌萎缩症（SMA），SMA广义上属于运动神经元疾病，它是逐渐发展的，会累积到呼吸机能。“得这种病的人生孩子非常罕见，从医学安全角度来说，不应该让她怀孕，她属于非常高危的产妇，这种病容易发展成呼吸肌无力。”

Armed police general hospital neurology department director WuShiWen think,According to the medical record LvYuanFang are suffering from spinal muscular atrophy(SMA),SMA generalized belongs to the motor neuron disease,It is the development of gradually,Will be accumulated to respiratory function."That is the life of the child is very rare,From the medical safety point of view,Shouldn't have let her pregnancy,She belongs to very high risk of maternal,The disease easily developed into the respiratory muscle weakness."

　　吴士文说，既然有医院首先接受了她，就应该实行首诊负责制，这家医院接收了，就应该对患者负责，否则其他医院很难接收。吕元芳是非常高危的产妇，因为呼吸困难可能连麻药都无法使用，生产时打上呼吸机，在生产后能不能让呼吸机停下来还不知道。“最重要的是，吕元芳的生产必须要有神经内科的医生参与。”

WuShi said,Since the hospital first accepted her,You should practice first diagnosis responsibility system,The hospital received,Should be responsible to the patient,Otherwise it is difficult to receive other hospitals.LvYuanFang is very high risk of maternal,Because of the difficulty in breathing may even anesthetic can use,Production a breathing machine,In production can make breathing machine stop to also don't know."The most important thing is,LvYuanFang production must have neurology department doctor participation."