Jamie and Jackson's CHD Story

After learning of her son’s congenital heart defects, mother says her grief turned to strength, 而医疗挑战使她的家庭更加紧密地团结在一起.

After Jamie Dawson and her husband, Layne, found out, 18 weeks into her pregnancy, 他们的儿子杰克逊有四个心脏异常, she went into their bedroom, climbed under the covers and cried for three days.

“我知道他的预期寿命会更短，”住在田纳西州萨默维尔的道森说. “我知道他必须做心脏直视手术，即使这样也无法治愈.”

So she cried and cried. She also prayed. And on the third day, 就在她告诉上帝她没有足够的力量来照顾一个有心脏病的孩子的时候, 发生的一件事改变了她的看法:她第一次感到杰克逊踢了她.

“在那一刻，”道森说，“我就像一只凤凰在飞翔. 我知道上帝会给我力量去做任何我必须做的事. My focus completely changed.”

That doesn’t mean everything became easy. Far from it. After she gave birth, 她只能摸到孩子的小脚，然后孩子就被迅速送到了一家设备更好的医院，接受了他的第一次手术. Once Jackson was finally home, 他的低氧水平需要去急诊室，并在新生儿重症监护室过夜.

That first year of his life, 道森把杰克逊的先天性心脏缺陷归咎于自己, 每天向她的丈夫道歉，仿佛生下一个有心脏缺陷的孩子是她的错.

“当然，他从来没有让我有过那种感觉，”她说. “It was all me blaming myself. 我甚至在想，他的父母可能希望他娶了另一个能给他们生个健康孙子的人.”

It was, she said, “a very dark place.”

That was nine years, three heart surgeries, 一个心脏健康的儿子的出生，加上无数的精神低谷和高潮，都是过去的事了. Jackson is now in third grade; his heart functions, at best, around 60%. In addition to his heart abnormalities, he has developed ADHD, anxiety and depression, 患有先天性心脏病的年轻人最常见的是什么.

他最近还被诊断出患有肝硬化, 从他的心脏无法向器官输送足够的含氧血液开始. He now sees a hepatologist as well as a cardiologist.

道森说:“在他前三次手术后，我们处于蜜月期. “现在他长大了，我们会开始看到问题出现. 不同类型的医疗干预可能是必要的.”

5月，杰克逊的心脏病专家告诉他，他可以再等一年再预约. However, 10月，他在学校开始出现胸痛，这促使他们比预期更早地再次预约.”

道森说:“他们认为这可能是心律失常的征兆。. “He’s now wearing a heart monitor for 30 days. 如果他感到头晕、胸痛或心跳过快, he knows to record what’s happening.”

这样的挫折使得不溺爱杰克逊变得更加困难, she said, acknowledging that she has to let him stand on his own. 

“He’s 9 years old. I have to let him grow. His cardiologist said, “我们让他做了三次手术，不是为了让他不能过自己的生活.’”

Jackson is a smart little boy, 他的家人让他知道他身体里发生的一切. 他妈妈一遍又一遍地告诉他:“如果你觉得有什么不对劲，就来找我. It may be nothing; it may be something. I’m trusting you. We’ll work through this together.”

Together is how, more than ever since Jackson’s birth, the family — grandparents, aunts, uncles, cousins and, for the last six years, a little brother named Cooper — deals with everything. Cooper was a surprise baby, Dawson said. Her husband didn’t want Jackson to be an only child, 但她对再要一个孩子的担忧是可以理解的.

“整个怀孕期间我都很害怕，”她说. “When I went for the anatomy test, where we found out about Jackson’s heart, they didn’t look at the baby’s heart. They sent me straight to a pediatric cardiologist.”

检查显示有异常——远没有他哥哥那么严重, but an initial cause for concern. 不过，库珀一出生，就接受了超声心动图检查，结果显示他的心脏健康. 

The brothers, she said, “are best friends.” 

为此，以及更多的事情，她感到幸福和感激. 

“My husband and I have been married 12 years, 杰克逊让我们更亲密，甚至比他出生时健康更亲密,” Dawson said. “我们(与杰克逊的心脏病)开战，并最终取得胜利. 这样的事情可能会让其他夫妻分开，但我们喜欢在一起共度美好时光.”

他们对大儿子的未来很现实:他的寿命比他的同学和同龄人短几十年. 新的健康问题可能会出现，旧的问题也不会好转. 然而，她和莱恩乐观地认为，对先天性心脏缺陷的研究将带来更长的寿命和更好的结果.

她说:“这就是为什么我要做我所做的事情，为什么我要发表演讲来提高人们的认识。. “当美国心脏协会邀请我讲述他的故事时，我根本不是一个公众演说家. 但我发现，通过这样做，我不再感到那么无助了. I’m doing something to make his life better. 任何时候他们需要我，我都会竭尽全力去帮助他们.”

Like most women, Dawson wears a lot of labels. She’s a wife, a mother, a daughter, a sister, a friend. Most of them, she expected. But not all. 

“我从未想过自己会拥有一个，”她说，“是我最自豪的一个:心妈妈.”