5岁时，她几乎完全心脏传导阻滞. 现在，一个“发电机”为她的心脏提供动力.

Kindergartener Sophia Schilpp came home from school gripping her temples. 她的头砰砰直响，痛得她想吐. She snuggled on the couch with her favorite pineapple blanket, an ice pack on her head.

Her mother, Shannon, thought it was a migraine, like the ones she often got. 第二天，她带着她的“苏菲熊”去看医生. He noticed Sophia's low heart rate and that her chart showed it had been well below average during her last few visits.

“我永远不会忘记她在我身边快乐的样子, 努力不让她知道我有多害怕,香农说. 索菲亚出生时很健康，很少生病. 虽然她经常玩累了, 香农和她的丈夫, 杰夫, 微软的, 俄勒冈州, 我以为她就是这样的人.

儿科医生让这家人去看心脏病专家. At the appointment, the limber and athletic Sophia smiled and danced around the room. The doctor hooked her up to an electrocardiogram machine that showed she had a condition called heart block.

心脏传导阻滞是一种心律紊乱. It happens when the electrical signal that controls the heartbeat is partially or completely blocked. 其程度从最轻到最严重，以3度来衡量.

The doctor gave Sophia a special monitor to wear for a few weeks to determine her degree. The device was itchy and uncomfortable, and Sophia tolerated it for three days.

两周后, Shannon was on the way to pick her up from school when the cardiologist called with the results. 她把车停在路边.

索菲娅几乎是完全的三度心脏传导阻滞. This helped explain why she got increasingly sleepy and grumpy after school. An echocardiogram showed no structural issues, rare for people with heart block.

"Her heart was doing everything it could to give her enough energy,香农说.

她立即打电话给杰夫. “我想，‘这怎么可能发生在我们身上? 她未来的生活会是什么样子?’”他说。.

还在处理医生的信息, 香农把车停在学校，看着排队接送的索菲亚, 和她的朋友们一起旋转跳跃.

“我想，‘这不可能是真的. 这是我的孩子，她看起来非常健康。”香农说.

The cardiologist referred the family to a pediatric cardiologist three hours away in Portland who specializes in electrical heart issues. 在极速上，新医生说索菲亚需要一个起搏器. 他们把手术安排在下周, 在她去看第一位心脏病专家后不到两个月.

香农和杰夫找到了解释手术的漫画. “她最主要的问题是，‘会疼吗?’”香农说，“我希望不会."

波特兰的酒店对索菲亚来说就像度假一样. She was captivated by a tram ride from the hospital parking lot to the facility.

"She found places within this really scary event to enjoy it and treat it like an adventure,香农说.

手术花了两个小时. 三天后，她回家了.

Sophia was up and about a week after surgery, but stayed home for six weeks. 她一开始只回学校半天.

在索菲亚回来之前, her teacher set up a Zoom meeting so the girl could show her classmates her incision. It was important for everyone to understand they needed to be more careful around Sophia because rough play could knock the pacemaker's small wires out of place.

"I wasn't totally sure if she was ready to go back, and I didn't want to push her,香农说. “但在第一个星期之后，她想整天呆在这里. 她和其他5岁的孩子一样精力充沛."

现在, 由她有时称之为“发电机”的设备供电,6岁的索菲亚比以往任何时候都精力充沛. She's doing ballet and loves to dance and sing and do cartwheels and somersaults. While she'll eventually need a new pacemaker, that likely won't be before she's 10.

“她快乐、健康，真的很享受生活，”杰夫说.

While some parents of kids with pacemakers let them participate in contact sports, 香农认为这太冒险了. 索菲亚可能不会成为奥运选手或职业篮球运动员, “但有些事情她可以参与."

There are other concerns, from fears that she'll get teased about her scar to technology issues. 因为可能会干扰她的设备, 索菲娅不能把药片放在离腹部六英寸的地方.

"I just hope that as a young adult she's surrounded by people who are really understanding of her and don't make her feel different or weird,香农说.

Shannon found solace in online groups of parents whose kids have similar conditions. One story stood out – a 25-year-old in great health with a case similar to Sophia's.

“在这样的社区里有一种安全感，”香农说. “当你走神的时候，你可以回到事实."

她说，这家人还注重感恩. "We try to remain in the present and be really … grateful for every step that's been taken to get us to the point where her heart is now safe."

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

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