Evan with Dr. Courtney Wein

经过几个月的努力，帕特丽夏和克里斯终于发现他们怀孕了. 他们非常兴奋地告诉家人和朋友，他们即将成为一个三口之家. What they did not expect, however, 18周的解剖扫描会带来新的担忧吗.

“当他们进来告诉我们他的心脏出了问题, we were just completely shocked,” Patricia recalls. 

Doctors quickly referred Patricia to Courtney Wein, D.O., a pediatric and fetal cardiologist at Johns Hopkins All Children’s Heart Institute in St. Petersburg, Florida. Wein和她的团队进行了胎儿超声心动图，对婴儿的心脏进行了深入的评估，并确认他患有动脉干. 动脉干是一种罕见而复杂的先天性心脏缺陷，其中只有一根血管(而不是两根)从心脏脱落，并产生肺部和身体的动脉. 一开始作为一个困难的诊断转变成一个相互信任的旅程.

“Dr. 维恩真的改变了一切，”帕特丽夏强忍着泪水说. “她问我们是否要给我们的儿子取个名字，从那一刻起, she always referred to him as ‘Evan.’ She said, ‘I’m a part of your team now. This is our baby.’ Dr. Wein向我们保证，无论何时何地，她都会陪伴我们走好每一步——她做到了.”

“Being a mother myself, I know how important this child is to them,” Wein says, 在进行先天性心脏病诊断时, the team walks families through, step-by-step, with the utmost patience and care. “I try to give space so it can be a conversation. I show diagrams and discuss what the heart defect is. 我给家人时间来处理和表达他们的想法和感受. 听到这个消息与你第一次得知自己怀孕时的预期不同, 所以在他们消化这个消息的时候，我想听听他们的想法和担忧. … No question is silly!”

帕特丽夏和克里斯说，约翰霍普金斯儿童心脏研究所的团队随时为他们的家人服务. Wein和她的团队每月用超声心动图仔细监测Evan的发展. Their care plan included meetings with surgeons, anesthesiologists, intensivists, nurses, social workers and other clinical and non-clinical teams.

“我们可以获得如此丰富的资源. 当你在那种情况下，你不知道会发生什么，你会感到一种震惊. So, 约翰·霍普金斯儿童医院的团队真的帮助我们度过了整个过程，并在这种情况下尽你所能做好准备,” says Patricia. Now, all that was left was to wait for baby Evan’s arrival.

那一天是在2023年3月，帕特里夏住进了海湾健康街. 彼得堡的婴儿中心，位于约翰霍普金斯儿童医院的三楼. 一旦她的诱导术开始，帕特里夏开始收缩，埃文的心率开始下降. After about 24 hours in labor, 团队认为为了帕特丽夏和埃文的最大利益，她应该进行剖腹产. While the stork team waited in the wings to rush in if needed, Patricia and Chris were anxious to meet their son. 

当他到达时，一切似乎都很正常，没有出现任何并发症，他们感到宽慰和不知所措. 

“他有一头浓密的头发，绝对完美，”克里斯说. 

While Patricia recovered, Chris headed to the cardiovascular intensive care unit (CVICU) where the team cared for Evan, 做扫描和测试，家人知道他们会在孩子出生后进行. 研究小组注意到，在埃文出生的最初几天，他一直在努力呼吸, as well as fatiguing overall and feeding poorly. 出生仅10天，心脏只有胡桃大小的埃文第一次做了心脏直视手术 James Quintessenza, M.D., 为了给他的肺部和身体创造有效的血液循环，医生植入了一根导管(一种专门的管子). 

“Dr. Q是不可思议的，我们不能得到更好的处理，”帕特里夏说. “Nothing phases him. 我们确信在那个手术套房里不会发生任何事情. Q wouldn't be ready for.”

Evan’s surgery was a success, however, only a few days later, 他遭遇了肺动脉高压危象的挫折, which required expert resuscitation.

“As horrifying as it was, 我们也惊讶于团队的反应是如此迅速和冷静，让埃文稳定下来。”帕特里夏回忆道. 

“It was nothing like how it is on TV. There was no running and shouting ‘stat.’ They were the definition of professional,” Chris adds. 

经过几周的恢复，埃文可以回家了. While he was on a feeding tube and still needing time to heal, Wein continued to make sure his heart was recovering well.

那年夏天晚些时候，韦恩注意到埃文出现了呼吸窘迫的迹象. 她建议他们继续进行心导管检查，以确定下一步的行动. James Thompson, M.D., an interventional cardiologist, 发现埃文的心脏和肺部长了两个大动脉瘤. 

“We both cried a little, 但我们很欣慰，因为我们发现了这一点，并渴望继续前进,” Wein says, 回忆起埃文将不得不比预期更快地进行另一次手术. “He is a rockstar though, and he did great!”

10天后，这家人带着他们的小战斗机离开了医院.

今天，埃文做得很好，每次和他的心脏团队的访问都以微笑结束.

“Evan发展得很好，达到了他的里程碑，”Wein说. “我们的小摇滚明星已经能够成功地摆脱喂食管，并且做得非常好.” 

His parents have been thrilled with his progress as well, adding that he loves being outdoors and never sits still. 他非常警觉和好奇——总是在移动，试图探索.

“他最近发现了喷火战机，他是喷火战机的忠实粉丝. He's just fascinated by their music. It's amazing watching him grow into his own person, and we're so thankful to Johns Hopkins for making it possible,” says the proud dad. They now consider the heart team part of their own family.

“His medical team took a vested interest in Evan. 你可以看出，他们关心的是他作为一个完整的人，而不是他的诊断. When we had to go back for his second surgery, it was hard, but it was also like coming home to a family,” Patricia says. “He had so many people taking such good care of him.”