Prenatal tests showed their baby had not one, but two rare conditions

在他们的孩子出生之前, doctors had warned Stephanie and Justin Cervantes that his color at birth would be blue.

尽管知道他有心脏问题, 尽管我们在子宫里监视了他几个月, despite endless conversations about his future – how can parents possibly prepare themselves for that?

“我甚至不认为他还活着，”贾斯汀说. 他没有哭. 他什么也没做. 他们把他赶出了产房."

他说，就在那时，一切都击中了他.

“我很害怕，”他说.

这些问题在怀孕中途就开始了. During a routine anatomy scan, their baby boy didn't show his stomach.

不过斯蒂芬妮和贾斯汀并不担心. 这似乎只是个糟糕的时机. 斯蒂芬妮甚至开玩笑说, "I started doing jumping jacks to get him to move so the technician could see it."

几天后，另一次扫描确实显示了胃. 在错误的地方.

他的胃和其他附近的器官都在胸腔里. They'd pushed through a hole in his diaphragm called a congenital diaphragmatic hernia. 这并不是唯一的重大发现.

A fetal echocardiogram showed their son also had tetralogy of Fallot, 先天性心脏病一种以四个问题为特征的先天性心脏病. This was why the doctors braced Stephanie and Justin for their son to be blue at birth.

先天性膈疝，或CDH，是罕见的. 法洛四联症也是如此. Stephanie compares one person having both as being "like getting struck by lightning twice."

他们决定给孩子取名威廉, in honor of her dad; he'd died of a heart attack a month before she found out she was pregnant. Justin's dad had a heart attack while in his 50s and had open-heart surgery. But baby William's issues were not inherited; they just happened.

威廉于2021年2月抵达. 两天后, he had his first surgery; to correct his CDH, 医生把他的器官移到了该移植的地方.

While he recovered, Stephanie was released from the hospital and returned to her Houston home. 第二天，一场异常猛烈的冬季风暴袭来. Not only were Stephanie and Justin unable to get to the hospital for several days, 他们甚至不能打电话问候威廉. Power was out across Texas, leaving their cellphones useless, and they had no landline. They endured that agony for four days until finally reaching a nurse. 又过了一天，他们才能够再次去看望他们的孩子.

法洛四联症通过一系列手术修复. William's first surgery was postponed several times because he kept developing pneumonia.

两个月大的时候，他接受了14个小时的手术. 在他康复期间, Stephanie and Justin each were required to separately spend 24 hours in the hospital to make sure they knew 心肺复苏, 怎么给他们的孩子吃药, 这是多么痛苦的症状啊, 以及如何处理出现的问题.

大约四个月后，威廉回家了. 欢乐被恐惧冲淡了——斯蒂芬妮称之为“可怕”. “我想我几个星期都没睡过觉，”她说. "I was obsessed with his oxygen saturation and his heart rate and had no nurses around to assure me everything was fine."

在很大程度上，确实如此.

挑战包括去年8月与呼吸道合胞病毒的较量, 或者呼吸道合胞病毒, 这让他进了医院. He was slow to learn how to eat because of how long he spent getting fed through a tube in his stomach. 去年11月，他做了第二次心脏手术. 他还在吸氧.

“他可能不是奥运会游泳选手,斯蒂芬妮说, “但人们希望他活得非常充实。, 非常活跃的生活."

现在3, 威廉只吃一种治疗反酸的药, 两颗为他的心脏, 一片婴儿阿司匹林和多种维生素片, 都是通过喂食管给的. Eventually, his parents said, he'll be weaned off those as well as oxygen.

“他绝对教会了我们什么是力量，”斯蒂芬妮说. "He's been through more in three years of life than most adults go through in their entire lives."

Stephanie and Justin like taking William to a kids' gym – and he loves it, too. He also gets excited at a playground; like the healthiest of kids, 他在器材上玩得很开心，把自己累坏了. His speech is exceptionally good and, his parents said, he's quite the charmer.

“他最有个性，”斯蒂芬妮说. "All we wanted was for him to live at least a normal life, but I think he's meant for bigger things. 他所到之处都给人留下深刻的印象."

发自内心的故事 chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.