这个一年级的孩子出生时只有半个心脏,他想成为一名儿科外科医生

黛博拉·林恩·布隆伯格,美国心脏协会沙巴足球体育平台

McKenna Lewis, 7, has had three open-heart surgeries to treat a congenital heart defect. (图片由Stephanie Lewis提供)
McKenna Lewis, 7, has had three open-heart surgeries to treat a congenital heart defect. (图片由Stephanie Lewis提供)

Before Stephanie and Brennen Lewis could host the baby gender reveal party they were planning for family and friends, 他们约好要去做超声波检查. 他们渴望再看一眼他们的第一个孩子.

技术人员检查了婴儿的骨骼、大脑和主要器官. 测试包括对婴儿的心脏进行扫描. 看起来不太对劲.

斯蒂芬妮的医生马上把她介绍给了儿科心脏病专家. That same day, she had a fetal echocardiogram, which took pictures of the baby's heart. 之后,医生让这对夫妇坐下.

"This is a normal heart," he said, pointing to the drawing he'd sketched on a dry erase board. “这是你孩子的心脏."

他们的女儿患有左心发育不良综合症. It's a rare congenital heart defect where the left side of the heart is significantly underdeveloped and can't pump blood well.

The drawing the pediatric cardiologist sketched on a dry erase board to explain hypoplastic left heart syndrome. (图片由Stephanie Lewis提供)
The drawing the pediatric cardiologist sketched on a dry erase board to explain hypoplastic left heart syndrome. (图片由Stephanie Lewis提供)

Babies born with the syndrome typically need a series of surgeries after birth. The Lewises would have to wait for their baby to grow to see how severe her case might be.

斯蒂芬妮哑口无言. 眼泪顺着她的脸流下来.

That night at dinner with Brennen's parents, Brennen encouraged Stephanie to stay optimistic.

“让我们继续计划性别揭秘,”他说.

接下来的几个月,我们定期对婴儿进行超声和扫描. Stephanie was petrified of what condition her daughter would be in at birth.

他们在西棕榈滩医院的医生, 佛罗里达, suggested delivering the baby at a hospital in Miami that would be better equipped to care for the newborn. The Lewises opted to deliver in the more familiar setting of their local hospital, 然后根据需要进行运输.

斯蒂芬妮通过剖宫产生下了麦肯纳. 她把女儿抱在胸前片刻, 然后医生在婴儿的喉咙里插了一根管子来帮助她呼吸.

布伦南和麦肯纳一起乘坐救护车前往附近的机场. 他们乘坐医疗直升机去了迈阿密.

McKenna Lewis being transported in a medical helicopter to Miami shortly after her birth. (图片由Stephanie Lewis提供)
McKenna Lewis being transported in a medical helicopter to Miami shortly after her birth. (图片由Stephanie Lewis提供)

Brennen FaceTimed Stephanie with updates for two days, until she was healthy enough to join them. 麦肯纳需要做三次心脏直视手术. 在麦肯纳的第五天,她经历了第一次.

Stephanie and Brennen fell asleep on each other as doctors worked on their daughter's heart for seven hours. The procedure redirected the flow of blood away from the problematic left side, so the right side of her heart could pump blood to both her lungs and the rest of her body.

与此同时,基因检测已经完成. 该公司没有解释导致缺陷的原因.

两周后,斯蒂芬妮和布伦南抱起了他们的孩子. During their hospital stay, they watched Hurricane Irma sweep through the city from their room. 手术后一个月,妈妈、爸爸和麦肯纳回家了.

当然,这并不是他们梦寐以求的新生儿体验. 刘易斯一家处于“生存模式”."

斯蒂芬妮·刘易斯第一次抱着麦肯纳. (图片由Stephanie Lewis提供)
斯蒂芬妮·刘易斯抱着她的女儿麦肯纳. (图片由Stephanie Lewis提供)

斯蒂芬妮和布伦南照着一本装满指示的活页夹去做. 有多种药物可供使用, 每日体重检查, 每周用回声器预约医生, x光和血液检查. They had a nurse on speed dial and let their local fire and rescue squad know about McKenna in case of an emergency.

两个半月时,他们又回到了医院. 医生进行了检查,看看麦肯纳是否准备好接受第二次手术, 这会改变血液的流向吗, 减轻右心室的压力. 原来她马上就需要.

麦肯纳恢复得很好. 家庭生活陷入了足够好的状态, 在她两岁生日前后, 她成了一个名叫德克兰的健康男婴的大姐姐.

大约六个月后,麦肯纳做了第三次手术. 程序完成重路由, this time ensuring all of the oxygen-poor blood returning from the body flows to the lungs.

最后, Brennen began releasing the stress he'd been carrying since learning his daughter needed not one, 不是两个, 但是三次开胸手术.

“我确实有很多白头发,”他说.

后来,布伦南换了工作. He left his family's business to pursue his dream of a career in law enforcement. 他是县治安官办公室的一名警官.

现在,麦肯纳是一个快乐健康的7岁孩子. 她长大后想成为一名儿科外科医生. 她和弟弟摔跤, 尽情地骑着她的摩托车, 喜欢啦啦队和体操.

“我喜欢绳子,但我最喜欢的是平衡木,”麦肯纳说.

圣诞节前夕,麦肯纳第一次坐飞机. 一家人飞到加拿大去看斯蒂芬妮的父母. 斯蒂芬妮说:“这对孩子们来说完全是个惊喜. 这也是他们第一次看到雪.

The Lewis family, clockwise from top left: Stephanie, Brennen, Declan and McKenna. (图片由Stephanie Lewis提供)
The Lewis family, clockwise from top left: Stephanie, Brennen, Declan and McKenna. (图片由Stephanie Lewis提供)

McKenna sees her cardiologist once a year and takes medications to keep her heart rhythm and blood pressure steady. Her medicines can be hard on the kidneys, and McKenna gets muscle cramps and dehydrated.

“她将永远只有一个心室, 障碍依然存在,斯蒂芬妮说, “但它们是可控的."

Most important now is for McKenna to stay active to build muscle, eat healthy and be well hydrated. 如果她的心脏功能下降,下一步就是心脏移植.

但她也可能永远不需要.

在学校里,麦肯纳周围都是支持她的同学和老师. When the Lewises signed up for their local 美国心脏协会 Heart Walk, 他们做了队服. 在学校的麦肯纳日,她的一年级同学都穿着这些衬衫. 今年,麦肯纳是美国心脏协会的全国心脏行走大使.

McKenna Lewis (right) with her brother, Declan, at a Heart Walk in 佛罗里达 last year. (图片由Stephanie Lewis提供)
McKenna Lewis (right) with her brother, Declan, at a Heart Walk in 佛罗里达 last year. (图片由Stephanie Lewis提供)

现在, the Lewises take comfort in the fact that there are women born with McKenna's condition now in their 20s and 30s who have their own children.

"Back in the '80s, some of these kids never made it out of the delivery room,斯蒂芬妮说. "Because of advances in heart care, there's a long horizon ahead for McKenna."

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


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