杰米和杰克逊的冠心病故事

在得知儿子有先天性心脏缺陷后, 母亲说她的悲伤变成了力量, while medical challenges knit her family more tightly together.

以杰米·道森和她丈夫命名, 莱恩, 发现, 怀孕18周了, that their son Jackson had not one but four heart anomalies, 她走进他们的卧室, 爬到被窝里哭了三天.

“I knew he’d have a shorter life expectancy,” said Dawson, who lives in Somerville, Tennessee. “I knew he’d have to have open-heart surgery, and even with that there is no cure.”

于是她哭了又哭. 她也祈祷. 第三天, just when she had told God she wasn’t strong enough to handle a baby with heart troubles, something happened that changed her outlook: She felt Jackson kick her for the first time.

“In that moment,” said Dawson, “I was a phoenix rising up. I knew God would give me the strength to do whatever I had to do. 我的关注点完全改变了.”

这并不意味着一切都变得容易了. 远非如此. 在她生完孩子之后, she was only able to touch her baby’s tiny feet before he was whisked away to a hospital better equipped to handle his first surgery. 杰克逊终于回家了, his low oxygen levels necessitated trips to the emergency room and overnight stays in the neonatal intensive care unit.

那是他生命的第一年, Dawson blamed herself for Jackson’s congenital heart defects, apologizing to her husband every day — as if having a baby with a heart defect was her fault.

“Of course he never once made me feel that way,” 她说. “都是我在责怪自己. I was even thinking that his parents probably wish he had married someone else who could give them a healthy grandchild.”

她说，那是“一个非常黑暗的地方”.”

那是9年, 三次心脏手术, the birth of a heart-healthy son — plus countless spirit dips and surges — ago. Jackson is now in third grade; his heart functions, at best, around 60%. 除了他的心脏异常, 他得了多动症, 焦虑和抑郁, which is common for youngsters with congenital heart disease.

He also was recently diagnosed with cirrhosis of the liver, which began when his heart wasn’t able to pump enough oxygenated blood to his organs. 他现在既看肝病专家，也看心脏病专家.

“We were in a honeymoon period after his first three surgeries,道森说. “Now that he’s older, we’ll start seeing issues come around. Different types of medical interventions might be necessary.”

In May Jackson’s cardiologist told him that could wait a year before having another appointment. 然而, in October he began developing chest pains at school prompting another appointment sooner than they had hoped.”

“They thought it might be a sign of developing arrhythmia,道森说. “他现在已经戴了30天的心脏监测器. If he feels dizzy or has chest pains or feels like his heart is beating too fast, 他知道记录发生了什么.”

这样的挫折使得不溺爱杰克逊变得更加困难, 她说, 承认她必须让他自己站起来. 

“他今年9岁. 我必须让他成长. 他的心脏病专家说, ‘We did not put him through three surgeries for him to not get to live his life.’”

杰克逊是一个聪明的小男孩, and his family keeps him in the loop of everything going on inside his body. His mom has told him over and again, “If you feel like anything is off, you come to me. It may be nothing; it may be something. 我相信你. 我们会一起解决的.”

在一起就是这样, 比杰克逊出生以来任何时候都要多, 家庭——祖父母, 阿姨, 叔叔, 堂兄弟和, 过去的六年里, 一个叫库珀的小弟弟——包办一切. 道森说，库珀是个惊喜宝宝. 她的丈夫不希望杰克逊成为独生子, but she was understandably apprehensive about having another baby.

“I spent the entire pregnancy completely afraid,” 她说. “当我去做解剖测试的时候, 我们是在哪里发现杰克逊心脏的, 他们没有检查婴儿的心脏. 他们直接把我送到了儿科心脏病专家那里.”

Tests showed an abnormality — not nearly as serious as those of his brother, 但这是令人担忧的最初原因. Once Cooper was born, though, and had an echocardiogram, his heart was pronounced healthy. 

她说，这对兄弟“是最好的朋友.” 

For that, and for so much more, she feels blessed and is grateful. 

“我和我丈夫结婚12年了, and Jackson brought us closer together even more than if he had been born healthy,道森说. “We went to war (against Jackson’s heart disease) and came out on the other side. Something like this can drive other couples apart, but we love spending quality time together.”

They are realistic about their elder son’s future: a lifespan decades shorter than those of his classmates and peers. New health issues that may arise and old ones that won’t get better. Yet she and 莱恩 are optimistic that research into congenital heart defects will lead to longer lives and better outcomes.

“That’s why I do what I do, why I give talks to raise awareness,” 她说. “When the 美国心脏协会 asked me to tell his story, I was not a public speaker at all. But I’ve found that by doing so, I didn’t feel so helpless anymore. 我在做些让他生活得更好的事. Any time they need me, I will move heaven and earth to be there.”

像大多数女人一样，道森身上有很多标签. 她是一个妻子，一个母亲，一个女儿，一个姐妹，一个朋友. 大多数人，她想. 但并非全部. 

“The one I never thought I’d have,” 她说, “is the one I’m most proud of: heart mom.”