事件记录
在本期的《大发娱乐》节目中, 杰克汉斯莱, 一位患有先天性膈疝（CDH）新生儿的父亲两次讲述了他的故事. Listen to the interview above or read the transcript below.
记录:
面试官: 杰克汉斯莱 was told not once, 但在他的生命中有两次他的新生儿有先天性膈疝的出生缺陷, 也被称为CDH. 从那时起, 他让人们意识到这一缺陷，以大发娱乐其他患有同样疾病的孩子的父母更多地了解它. Josh, thank you for telling your story today.
杰克: Oh, you're welcome, my pleasure to be here.
面试官: 乔什，你提到了先天性膈疝的诊断一个非常孤独的诊断. 你这话是什么意思?
杰克: 所以当你得到先天性膈疝的诊断时你以前从未听说过. Your family members have never heard of it before. More often than not, your doctor's never heard of it before. So it creates this feeling of it's completely unknown. 你看到那些新闻报道，哦，这种情况在三百万人中发生一次. It's not that rare, but it feels that way. And nobody understands what it is; nobody understands what's going to happen. 这只会让你感到不确定，因为没人知道. Nobody knows what to tell you.
面试官: What do you do, how do you get through that? So you've been through it twice.
杰克: Honestly, being young and naive, kind of feeling invincible . . .
面试官: 是的,当然.
杰克: With our first child it was kind of a, 好吧, if we don't accept the alternative it's not a possibility, 所以大发娱乐总是告诉自己，这是将要发生的，那是将要发生的, 但这并没有发生.
面试官: And the alternative being that your child wouldn't pass away.
杰克: 正确的.
面试官: 是的.
杰克: 正确的. 所以，你知道，它是 . . .
面试官: Would you change how you would approach that the second time?
杰克: The second time we were more optimistically cautious, but again we adopted the attitude of, 好吧 the only thing we can do is say, 这将是不同的. You know, We're not going to lose two children. And that's what got us through. And we did not have a support system. 直到大发娱乐的第二个女儿去世后，大发娱乐才找到任何提高意识的团体或支持系统.
And had we had Cherubs while we were dealing with the diagnosis, while we were dealing with course of care, 我确实认为事情会有很大的不同因为大发娱乐会有可以交谈的人, we would've had an understanding, we would've been able to rely on their experiences. And we didn't have any of that, so we did the best we could. And our way of handling it was, 好吧, if we just have unwavering faith that everything will be okay, everything's going to be okay. And it was, that's owed to us. 大发娱乐有一个孩子去世了. 大发娱乐很好. 事实并非如此.
面试官: 所以直到你的第二个孩子去世后你才发现有支持资源. And you are a fantastic support resource. What would you say to somebody that just got this diagnosis? What advice would you give them, 什么信息, 你现在会对他们说什么，你希望别人能帮你做什么?
杰克: 一切都会好的. Regardless of the outcome, you can't focus on the negative. There are people who understand the process. And if your child passes away, if your child is critically ill for years and years and years, or if your child's 100% healthy after you're done, you still live with that trauma of the diagnosis, 重症监护病房的住院时间. 每个人都明白, 不管结果如何, regardless of the end of the journey, 大发娱乐都有共同之处. So reach out, share your worries, share your concerns. 问问别人是怎么做的. 如果你不需要建议，就说，我需要把我的心事说出来. We'll all listen because we all get it. So you don't have to be alone.
面试官: 比如，如果你知道有个小天使，就是你参与的组织. 如果你知道有一个组织为有同样经历的人大发娱乐提供大发娱乐, you would've reached out to them at that point?
杰克: 绝对. My wife and I have traveled to San Francisco, Boston. 华盛顿D.C., 都柏林, 参加了不同的会议，我见过很多很多被诊断出患有这种疾病的家庭. 当大发娱乐见到他们时，他们中的大多数人，从来没有见过其他被诊断患有CDH的家庭. And to actually have that in person, 更不用说网上的存在了, 但真正见到某人是一种即时的联系.
面试官: 是的. Somebody you don't have to explain it to.
杰克: 正确的, right, they get everything. 你知道，当我说，哦，是的，所以在重症监护室发生这件事的时候，他们会说，哦，是的. 我不需要花20分钟来解释这意味着什么.
面试官: 是的,完全. 对于刚刚接受诊断的家庭，你还有什么建议来大发娱乐他们度过这个过程?
杰克: Personally, I would say stick it out. You never know what the future may bring. It may seem pretty bleak when you hear a 50% mortality rate. There are some scary things in there. 我看看我的经历. Our first daughter only survived 14 hours before she passed away. We get hit with it a second time and, 当然, 大发娱乐考虑过堕胎，让大发娱乐放弃所有的痛苦和其他一切. But personally, my wife and I don't believe in that. If people do, to each their own. 这只是我的观点.
但当我看着它, 如果大发娱乐那样做的话, we wouldn't have had 15 months with our second daughter. We would've never had the wonderful opportunities that we had. 也许她在不同的环境下还活着而大发娱乐永远不会知道. And living with the uncertainty . . . just hold out some faith, hold out some hope. I know a lot of families that have had two CDH children, 有些都是幸存者, some both non-survivors like myself, 一个non-survivor, 一名幸存者. 我从他们身上学到的是，你不能放弃希望，因为结果是如此不同.
You never know what's going to happen, 你为什么不给自己一个机会体验一下为人父母的感觉呢? And the pain if it doesn't work out, the pain is pretty bad. 但对于我和我的妻子来说，大发娱乐认为不知道的痛苦会更大. And I think a lot of people feel hopeless and a lot of despair, 但是要知道，你的孩子很有可能活下来并茁壮成长，因为他们没有. And so just focus on the positive to get yourself through.
面试官: 在这种非常罕见的疾病中，有一些家庭经历的共同线索吗?
杰克: 当你的孩子在重症监护室患有CDH时，你就有了医院里病情最严重的孩子. There's nobody worse off than a CDH child. 这是他们中的每一个人，不管结果如何，这就是一切的开始. And so that's the common thread. We understand the journey, even though the outcome may be different.
面试官: 是的. 几乎每个父母在得到这种诊断时都会有的问题和担忧? Something that you wish somebody would've clarified for you?
杰克: 我希望有人能告诉我这种事还会发生第二次，尽管这种事很罕见. You have the 1 in about 2,500, 3,000 chance of it occurring. The chances of that recurring again are 2% of that number. So we're literally dealing with thousandths of a percent.
面试官: But then even after that second child developed it and passed away, you and your wife decided to have another baby.
杰克: 是的，大发娱乐又有两个了.
面试官: 所以我认为这是一个很好的问题对于那些被诊断出患有这种疾病的孩子已经去世的人来说. Where do you find the bravery to even go down that road again?
杰克: For us we just knew that we needed to have children. 大发娱乐一直都知道，大发娱乐一直觉得这是大发娱乐需要做的事情. 甚至在生了两个孩子之后, 大发娱乐只是觉得没有比已经发生的更糟的事了, 我猜. 大发娱乐必须向前推进，大发娱乐不能生活在对已经发生的事情的恐惧中, but only live with the hope of what may happen. And we've had two children that have no problems at all.
面试官: 是的. Any final thoughts on the loneliness of the diagnosis of CDH?
杰克: Just know it's not as lonely as it sounds. There are a lot of people out there who understand, 谁得到了？, who are willing to talk 24 hours a day, 一周七天. 在小天使，大发娱乐有随时待命的父母，有幸存者，也有非幸存者. 大发娱乐有社交媒体群, 大发娱乐有各种各样的途径让你联系并获得你需要的任何程度的支持. 如果你想要建议，如果你想要有人跟你说话，大发娱乐会帮你的. 如果你只是想讲你的故事让别人听，大发娱乐也会这么做，因为大发娱乐懂. 大发娱乐都有过这样的经历. 你不必感到孤独. You don't have to face it on your own.
And that's the one of the biggest things we do is, 大发娱乐想让人们知道, 找到其他人对大发娱乐来说意味着什么，这对大发娱乐的应对方式产生了巨大的影响. Even though it was kind of the aftermath of everything, it still made a huge difference and impact in our lives. 我可以看到，通过分享大发娱乐的经历，大发娱乐给别人的生活带来了不同.
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