Patient Story
Noavah故事:肺动脉瓣狭窄和动脉导管未闭
Noavah's Heart
Patient Story Highlights
- 1岁的Noavah出生后不久被诊断为肺动脉瓣狭窄和动脉导管未闭, which affected her breathing and overall heart function.
- After several appointments, echocardiograms, and less invasive procedures to fix her heart, 诺亚娃接受了心脏直视手术来修复心脏瓣膜.
- Surgery was successful, 诺亚的家人很高兴能够跨越这个障碍, 尽管他们知道还有一段路要走，需要更多的心脏病预约和超声心动图检查.
诺亚有一个微笑和笑声，可以把任何皱眉颠倒过来. Her mom, Deza, describes her as silly and outspoken. 她看起来和其他1岁的女孩一样，喜欢说话、玩耍和探索周围的环境. However, Noavah wasn’t always the happy baby she is now. 就在诺亚出生的时候，内心的问题让她的母亲发现了一些令人心碎的事情.
“The pregnancy was actually normal,” Deza said. “When I gave birth and she entered the world, 我看到她脸色发紫，没有氧气，他们不得不赶紧把她抬到桌子上.”
Doctors at a local hospital seemed to stabilize Noavah, 但几天后，当他们回到家时，德扎意识到有些不对劲. 诺亚瓦再次出现呼吸困难，被送往当地急诊室. Shortly after, Noavah被诊断为肺动脉瓣狭窄和动脉导管未闭, 她心脏的一个瓣膜变窄，影响了她的呼吸和整体心脏功能. While she lived in Tampa, 她很快被转介到由心脏病专家和心脏外科医生组成的专家小组 Johns Hopkins All Children’s Heart Institute in St. Petersburg, Florida.
“When we saw her for the first time, 瓣膜狭窄或紧绷的程度可能至少是中等, in terms of severity,” says Benton Ng, pediatric cardiologist. “我把肺动脉瓣描述为心脏的单向门，它打开让血液进入肺部，然后关闭，这样血液就不会回流到心脏. Normally, 瓣膜会很容易打开，所以不会对心脏造成很大的压力, but sometimes those valves are thick or abnormal, 因此，心脏必须更用力地挤压才能打开瓣膜，将血液输送到肺部.”
After several appointments, 超声心动图(观察心脏运动)和微创手术来修复她的心脏, Noavah was running out of options. 2021年11月，她接受了心脏直视手术来修复心脏瓣膜.
德扎回忆说:“我告诉医生，她这么小，怎么可能做心脏直视手术。. “I couldn’t think straight. I couldn’t get my mind right.”
It’s a conversation James Quintessenza, 通常是和那些关心给孩子做心脏手术的家庭, 哪个大小和核桃或者婴儿紧握的手差不多.
“I’ve been doing this a long time, and it’s never easy to approach this subject with families,” says Quintessenza, co-director of the Heart Institute and chief of 约翰霍普金斯儿童医院的心血管外科医生. “For them, this is probably one of the biggest, major issues they will ever have to face as a parent, that their child has to have open-heart surgery. For us though, it’s what we do every day.”
医生向诺亚的家人解释了心脏手术的迫切需要, they were sure they were in the right place, so off Noavah went to the operating room. Deza spent several hours in the waiting room of the cardiovascular intensive care unit站在一旁，看看这是否是他们家人一直在寻找的解决方案.
“我们基本上对她的肺动脉瓣进行了彻底检查，”昆塔森扎说. “In Noavah’s case, 她有四个小传单，它们都有点系住了，功能不太好, and they were somewhat thickened. So, 我们花了很多时间去拿每一张传单, thinning the leaflets, 尽量打开肺动脉瓣的根部.”
Surgery was a success. Quintessenza补充说，随着诺亚的成长，观察她的心脏是否有任何变化是很重要的.
Quintessenza补充道:“我们尽我们所能修复了诺亚瓦所拥有的东西。. “现在要看的是她的生理机能，随着时间的推移，她会看到它是如何维持的，以及它是如何随着她成长的。.”
Noavah’s family knows there is still a journey ahead, 还有更多的心脏科预约和超声心动图, but they were thrilled to clear this hurdle.
“Noavah is happy. Noavah is doing so great,” Deza said. “医生让我觉得我是家人，让我觉得我的女儿是家人. I love this hospital. This is the hospital you want to go to for your child.”
她的心脏团队也感受到了爱，并期待着成为他们家庭的一员.
“当一个家庭信任我们照顾他们的孩子，他们的孩子表现良好，一切都按计划进行时，没有什么比这更好的感觉了。,” Ng adds. “That is what keeps us doing what we’re doing.”
