Personal Stories from Friends of One Heart Health

Hi all,

The One Heart Health team would like to share with you two stories from dear friends: Gary Guo (a CHD patient himself) and Janis Zhu. Thank you, Gary and Janis, for sharing your perspectives and personal stories.

By Gary Guo (June, 2018) 

As a patient of congenital heart disease, my understanding of this disease is relatively late. When I was a child, every time I asked about the origins of the scar on my chest, my parents’ reply always avoided the real reason in order to relieve my pressure. Because of the rapid development of human medical technology in the Twenty-first Century, congenital heart disease can be completely cured, but perhaps because of the scar after the operation, the life of the patient is somewhat different from that of other people.

We do not have the opportunity to choose at birth, the body automatically carries out such a disease, and there is only two way out, the good one left the scar, the other one can not enjoy the right to live. As long as a child with congenital heart disease is born, the family must go through a gamble, bet almost all of the property, to see if the child will be cured, and the success rate of this gamble is only about 40%. My mother later told me that the hospital had issued a notice of danger, but my parents did not hesitate to continue treatment. The cost of the operation and the low success rate are prohibitive for many families, and a middle-class family needs to bet almost all of the property to take one child back from the fate. I was one of the lucky ones who survived the operating table, but there were always the unfortunate, poor, withered toddlers to make their families immerse in great pain.

One in 100 newborn babies will be diagnosed with congenital heart disease, and in every four children with congenital heart disease, a baby will have an unhealthy color in the skin because of the congenital heart disease. Until now, there is still a serious illness that can not be completely treated, resulting in a child who knows his or her destiny from the very beginning. All kinds of difficulties did not stop human from conquering the congenital heart disease, but the psychological problems of patients after being cured are always in the neglected corner. People always feel that being cured is the most important thing, but whoever thought of even though the lives are being rescued, the children’s psychology is also traumatized.

When I grew up, I was more and more afraid of the scars on my body, and I would not tell anyone anything about that scar. Recall in my primary school and junior high school, every school physical examination, boys always have to queue up, take off the coat, and then measure weight and heartbeat, but I dare not show the chest out. Although some doctors would sympathize with me, while they called me after the physical examination, as time went on, my secret was known by some students. First of all, the students are surprised and they are all kinds of “whimsy” that explains the connection between congenital heart disease and my physical characteristics. Originally I had no intention of caring about them, however, as their idea becomes a personal assault, I estranged them.

It is impossible to judge others’ ideas solely based on my own opinion after all. But I suggest that from now on, we should also pay attention to the psychological problems of children with congenital heart disease after they are cured. Let all lucky children grow up healthily and happily and face life in a correct and sunny way.

作为一个先天性心脏病患者，我对于这种病的了解实际上相对较晚。记得小时候，每次我询问我胸前的术后疤痕的来历，我父母的回复总是避开真实的原因，从而减少我自己内心的压力。由于21世纪人类医学技术蓬勃发展，先天性心脏病已经完全可以被治愈，但也许就因为那一道术后疤痕，患者的生活与其他人有着些许的差别。

我们并没有机会选择，出生的时候体内自动携带着这样一种疾病，而出路只有两种，好的那种留下了疤痕，差劲的那种根本无法享有生活的权利。只要有先心病患儿诞生的家庭，这个家就必须经历一场豪赌，赌上几乎所有的财产，来看看孩子会不会被治好，而这场豪赌的成功率只有40%左右。母亲后来告诉我，当时医院已经下发了病危通知书，而我的父母毫不迟疑地选择了继续治疗。手术的昂贵费用及较低的成功率让很多家庭望而却步，一个中产阶级家庭需要赌上几乎全部财产来从命运手中夺回一个孩子。我是幸运的一个，成功从手术台上存活下来，但是总有那些不幸的，可怜的，凋零在手术台上的幼儿使各自的家庭沉浸在巨大的伤痛之中。

每100个初生婴儿里就有一个会被诊断为先天性心脏病，而每四个先心病患儿里，就有一个婴儿会因为先心病的影响，皮肤呈现出不健康的颜色。直到现在，依然存在由于病症过于严重而无法彻底治疗，导致患儿从一出生开始就知道了自己的命数。各种困难都没有阻挡人类攻克先心病的脚步，但是患者被治愈之后的心理问题总是处在被忽略的角落里。人们总是觉得被治好了病才是最重要的，可是谁又能想到命被救回来的同时，患儿们日后的心理也受到了创伤。

长大以后我对身上伤疤的事情越来越忌惮，不愿向任何人诉说任何有关那道伤疤的事情。记得我小学和初中的时候，每逢学校体检，男生总要排成队，将上衣脱光，然后测体重，听心跳，但是我不敢把胸口露出来。尽管有些医生会体谅我，在别人体检完之后把我叫去，但随着时间的推移，我的秘密还是被一些同学知道了。同学们首先是诧异，然后是各种想要解释先心病与我身材特点联系的“奇思妙想”。随着他们看我眼光的变化，本来无意关心的我对他们的说法产生了介怀。

以我自己的经历，去审度别人的想法，终究不能全面。但我倡议，从现在开始，我们也要关注治愈后先心病患儿的心理问题。让所有幸运的儿童健康快乐地成长，以正确，阳光的视角面对生活。

By: Janis Zhu (June 2018)

When I was in elementary school, my friend told me a story about a girl in her community. The girl participated in a track and field event, and she fell in a faint after running 800 meters long run. Then, she never opened her eyes again. This is my first acknowledgement of congenital heart disease.

Later I read a book called The Jade King by Huo Da, a Chinese author. The female protagonist, Xinyue, died when she was only twenty years old because she had mitral insufficiency, which brought up the tragedy of the book. I remembered the name of her disease, later on, I got to know that mitral insufficiency is one of the congenital heart diseases.

I am not a CHD patient, so I don’t know how terrible the experience is. After getting to know it from the others, I feel so fortunate that I was born healthy.

Some patients were not so lucky, they went into the surgery room and lived in the ICU ward when they were a baby without consciousness. The lucky ones got the big scar on their chest, and this is the sign that they cannot get rid of during their entire life. When the patients grow up, they would gradually realize that the scar marks the difference between healthy kids and them. We would probably feel pity for them, but they might not take it as a compassion. The patients are different, psychologically they think differently from us. On the other hand, the unfortunate ones do not even have the choice to live.

I’ve read a story online. The author is a CHD patient, and he kept a very humorous tone throughout his writing. He was diagnosed with CHD the moment he was born. During that period of time, the 1980s, when China just went through the economic reform, it took an immense amount of money to do the surgery as the technology at that time is not applied to the hospitals in small towns. The author said, even the doctor suggested “humanitarian destroy”. However, his family did not give up. Before he got a chance to do the surgery at the age of 5, his family cared him as much as serving the emperor. His family sold many valuable belongings in order to raise money for his surgery. The author said the reason why his families spent so much effort on saving his life is that he was so cute that they do not want to kill him, but we all know that it was because of their love to him. Now, the people he feels the most gratitude to are the 19 family members who helped him to survive from CHD, as it was them who offered him a healthy life. For him, to be alive is the greatest gift he has ever got.

Having CHD is a big matter not only to the children themselves, but also to their parents. Diagnosis, remedy, and recovery, this is a long-lasting battle and gamble for each family. Nobody would abandon their own child, and nobody would want their child to be unhealthy.

In fact, I think those who are acknowledged about their heart defect are lucky, at least they know they are different. For some children, just like the girl in the story my childhood friend told me, they are not aware of their health conditions. If the girl knew her health condition, she would not take risk to compete in athletic games, and the tragedy would not happen.

The early diagnosis of congenital heart disease, as well as the psychological care after the surgery, are the problems we need to focus on. Hope every child in the world can live healthily and happily.

小学的时候，同学跟我讲过一个故事。她小区里有个孩子参加运动会，结果跑完了800米就晕倒了，然后她再也没有醒过来……后来我妈妈也给我讲了一个相似的故事，她同事的孩子因为先心病很意外的去世了，他的家人很长时间以后才从失去儿子的阴影中走出来。这是我对先天性心脏病最早的认识。

后来我读了一本书叫做《穆斯林的葬礼》，女主角韩新月得了一种病，在她只有二十岁的时候就夺走了她的生命，造就了整本书的悲剧。我记住了这种病的名字，叫做二尖瓣闭锁不全，后来才知道那是心脏病的一种。

我并不知道先心病有多么的可怕，因为我没有经历过。所以我只能从别人的描述来想象这种病。在开始了解先天性心脏病之后，我很庆幸我天生是一个健康的人。

有些患者在刚出生还没有意识的时候就被送上了手术台。生存下来的幸运儿身上都会有一道疤痕，那是手术刀留下的痕迹，也是他们一生也摆脱不掉的印记。等到患者有了意识与记忆，那道胸口上的疤痕或许会是他们一生的心灵创伤。还有些不那么幸运的患者，他们甚至没有选择生的权利。

我在知乎上读到过一个故事，作者自己是先心病患者。作者很幽默，他说刚生下他时就确诊了先心病，而且当时正值八十年代初期，做手术的话要花费巨款还不一定能救得活，连医生都建议直接“人道主义毁灭”。但是他的家人都没有放弃他，全家人在他做手术前都像伺候皇帝一样照顾他。五岁做手术的时候全家砸锅卖铁为他筹款，最后幸运的活了下来。他现在最感谢的就是他的家人，他感谢他家里的十九位亲戚在那么困难的时候愿意帮他筹钱，没有家人就没有他的生命。他有一句话深深的打动了我：“可能对于我们这种刚出生就十分不幸的人来说，能活着就是最大的恩赐。”

先心病困扰的不止是孩子，还有他们的父母。诊断、治疗、康复，这对于每一个家庭来说都是一场长久的斗争。没有人愿意放弃自己亲生的孩子，也没有人希望自己的孩子长大以后不健康。

我觉得刚出生就得知自己患有先心病的孩子都是相对幸运的，至少他们在心理上已经有个准备了。有些孩子，就像小时候朋友跟我讲的故事里面的那个孩子一样，他们并不知道自己的身体与其他孩子的不同，甚至还在做着有害他们健康的活动。等到孩子突然发病的那一天，对于孩子自己、父母、家人、还有身边的人都是一种巨大的伤害。假如他们提前了解了孩子的病，一切来得都不会那么的猝不及防，也不至于酿成悲剧。

先心病的筛查，以及术后的心理干预，都是我们应该去关注的问题。愿每一个孩子都能健康的成长。