Julian with his mom and dad

How to best describe young Julian?

Julian, 一个7岁的小男孩，有着阳光般的头发，鼻子上完美的雀斑;一个精力充沛的佛罗里达男孩，在主题公园或任何地方都能和他的兄弟姐妹们保持同步.

朱利安，狂热的读者，滑板车、游泳和拥抱的爱好者.

他的妈妈摩根说:“他是我所有孩子中最可爱、最依偎的一个。.

If Julian’s mom and dad see him as a special gift, it’s partly because his origin story is so extraordinary.

“回想起他所经历的一切，”他的父亲戴夫说，“他真的像个奇迹.”

Beginnings

David Kays, M.D.

In early 2016, when Morgan was five months pregnant, she and Dave received crushing news from their doctor.

扫描显示他们未出生的孩子患有严重的先天性膈疝(CDH)。, a birth defect in which the diaphragm, the muscle that separates the abdomen from the chest, 发育不完全，留下一个洞腹部器官向上迁移到胸部, compromising lung growth.

Their baby had almost no discernable left lung, 他的心脏被推到了胸壁的一侧.

“I wasn’t given any level of hope for my baby’s survival,” Morgan says. “None at all.”

But Morgan and Dave didn’t readily accept this news. From the family’s California home, 摩根开始做研究——在全国范围内寻找专门从事CDH的医院和项目.

She soon learned about David Kays, M.D.他是一名儿科外科医生，在治疗CDH患者方面拥有数十年的经验 Center for Congenital Diaphragmatic Hernia at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida.

对团队的技能和知识印象深刻，并对中心的卓越成果(存活率超过90%)感到鼓舞, 远远超过了国家标准)，这对夫妇决定让凯斯照顾他们的孩子.

“我们相信这些孩子，”凯斯说，“即使是那些严重程度最高的孩子. Because of the level of care we’re able to provide, they truly can have great outcomes and quality of life.”

Hope

在一次信念的飞跃中，戴夫和摩根把他们的大家庭搬到了全国各地的圣. Petersburg in time for Julian’s birth.

一段家庭录像记录了他来到这个世界——如此脆弱, so critically ill — too sick to utter a first cry. 新生儿需要复苏，但团队已经准备好了.

摩根说:“即使在那种压力很大的情况下，他们也很冷静，确保我知道他没事。. “I felt such confidence in the team.”

朱利安接受体外膜氧合(ECMO), a machine that provides heart and lung function, and Kays promptly repaired his diaphragmatic hernia, moving his organs into place and patching the hole.

Now the baby needed time to heal and get stronger.

CDH患儿的长期表现在很大程度上取决于护理的水平和质量, not only before birth, but in those first hours, weeks and months after the child is born.

Beyond the highly refined surgical repair, 全儿童医院的CDH团队采用行之有效的策略来帮助保护和支持肺部和大脑.

长期预后也受膈疝严重程度的影响. 一小部分患者可能出现肠梗阻(有时与CDH修复后的瘢痕组织有关)或膈疝复发, which may necessitate additional repair surgery.

一些患有CDH的婴儿也可能在胸骨或胸骨出现凹陷，这种情况被称为 pectus excavatum. 如果需要手术修复，这可能在孩子的青少年时期进行.

胃食管反流(GERD)是CDH婴儿非常常见的问题, and many benefit from an anti-reflux surgical procedure.

Going Home

As the weeks ticked by, baby Julian continued to progress.

他的右心房出现了一个小血块，他一直在医院接受额外的治疗, but after 62 days, he was finally going home.

“We were extra careful at first,” Morgan says. “我们在家教育我们的孩子，因为我们想尽我们所能不让朱利安生病或遇到任何挫折.”

一开始，朱利安和凯斯的约会更频繁了，而且进展得很顺利.

After seven months, 他被切断了氧气(大多数CDH婴儿回家时至少需要几个月的氧气)和血液稀释剂来治疗血凝块, 哪些扫描显示随着时间的推移已经消失在心壁上.

One Year

对于一个患有CDH的婴儿来说，庆祝他的一岁生日是多么快乐啊.

With that milestone comes another — the 1-year checkup.

“We look at heart and lung function, at diaphragm integrity, 我们会检查他们的肌肉骨骼问题以及他们的营养和神经发育情况,” Kays says.

对于那些前往约翰霍普金斯儿童医院接受治疗并返回家乡的家庭, 鼎晖团队与当地医生和医疗中心保持开放的沟通.

Julian’s family never went home. They fell in love with the area and decided to stay.

Today, Julian is no longer on any medications, and although his left lung is very tiny, his right lung has adapted beautifully. 他正在成长，活跃，没有身体限制或学习延迟.

A future as bright as the Florida sun.

“Julian was a severe case, 和他一起取得如此杰出的成果真的很值得,” Kays says. “但我要告诉你……我们有数百个像朱利安这样的结果.”

Julian’s mom is a believer.

“We have experienced the level of care Dr. Kays and his team provide,” Morgan says. “For parents who face this, 和凯斯在一起的生存希望和生活质量都非常有利于你, I just want them to know that.”

• • •

Lately, Julian has taken up golf.

他爸爸给了他一套自己的小球杆，他也一直在训练自己的状态.

回想七年前，他身患重病的儿子来到这个世界, it would have been impossible for this father to imagine this 一天——在这一天，他对儿子最重要的关心莫过于完善他的高尔夫挥杆.

“我一直抱有希望，”戴夫说，“但我不知道会这么好.”