一开始是重感冒.
那是2022年的12月，4岁的Raylee Osuna咳嗽，鼻塞，还有轻微的发烧. Even though she seemed better after a few days, 她的妈妈, Klarissa希望, had a sense that something was still off.
几周后，尽管去看了几次医生，瑞莉仍然没有完全恢复过来. 在圣诞节的早晨, 她脸色苍白, 霍普把她带到他们安大略省家附近的紧急护理中心，要求做血液检查和其他检查.
At that point, none of Raylee’s results showed any cause for concern. “They all kept telling me it was just a virus,霍普说.
By then, it was early January. 全家人都在丹尼餐厅, Raylee’s favorite restaurant, 瑞莉把头放在桌子上，告诉她妈妈她不舒服. And she wasn’t eating – highly uncharacteristic for her, Hope noted.
在另一次医疗预约中，医生向霍普保证瑞莉只是便秘. 但后来, 几天后, 霍普注意到瑞莉的眼睛开始微微泛黄. “It was subtle,” she recalled. “No one would have been able to tell if I hadn’t noticed it.”
第二天, she took Raylee for another appointment, and this time the doctor ordered a test of her liver function, which showed that her enzyme levels were extremely high. 母女俩被送回了家，并被指示让霍普继续监视她. 瑞莉的水平升高很可能是由于病毒残留的炎症, 希望被告知, but her liver would likely recover on its own.
Instead, everything spiraled downward.
That night, Raylee was restless in bed and moaning in her sleep. 试着不慌张, 霍普和她丈夫, 吉尔伯特Osuna, debated about whether to wait until morning to bring her in. 现在，它是1a.m.但他们决定把瑞莉带到当地的急诊室，而不是再等下去.
在那里 were no pediatric emergency beds available, which meant Raylee needed to be transferred to a different facility. 霍普要求把她送到奥兰治县儿童医院(CHOC). “I figured, let’s go somewhere that specializes in children,” s他说.
快速失偿
Raylee was transferred by ambulance to CHOC. 霍普和她的丈夫再次被告知，肝脏通常会自行恢复.
But in Raylee’s case, that wasn’t happening. CHOC的医务人员很快建议将她转移到皇冠hga025大学洛杉矶分校美泰儿童医院.
在那里, 霍普和她的丈夫震惊地发现，是时候制定一个备用计划了:把瑞莉加入移植名单，以防她最终需要一个新的肝脏. 儿科胃肠病学家 罗伯特Venick他对霍普说，如果瑞莉的肝脏没有恢复，这是一张安全网.
“We were freaking out,霍普说. “What do you mean, transplant? He was super comforting and nurturing. 他承认我们很担心女儿的生命，并告诉我们，我们来对地方了.”
Raylee was acting fine at this point, but her skin was starting to appear yellow, 她眼睛里的淡黄色变得更加明显——这都是胆红素增加的迹象, indicating that her liver was continuing to decline.
与此同时, 其他废物, 比如氨, were building up as her liver struggled to function.
“肝脏的功能之一是清除血液中的毒素，”他解释说 Fady Kaldas, MD, director of the UCLA 肝脏移植手术 Program. “肾脏在某种程度上也会这样做，但它们不会清除氨，而是由肝脏来做. 当这些毒素积累时，它们会影响你的意识状态和大脑功能.”
皇冠hga025大学洛杉矶分校的健康专家已经为1000多名儿童进行了肝脏移植手术.
Learn more about 皇冠hga025大学洛杉矶分校健康's Pediatric 肝脏移植手术 Program
The condition, called hepatic encephalopathy, was yet another danger sign.
“Her ammonia levels caused her to go crazy,霍普说. “She was screaming bloody murder, like someone was hurting her. She was hitting me and kicking me.” Even as Hope and the nurses tried to calm her down, Raylee was running around the room, 在床上跳, 加强了, 表现得“像僵尸一样”,霍普回忆道.
The episodes would last for about 10 minutes and then subside, but Raylee was increasingly lethargic the rest of the time. She was taken to a procedure room to be intubated and heavily medicated.
“It was like my heart was pulled out,霍普回忆道. Raylee was no longer conscious, 但霍普和她的丈夫一直陪在她身边，给她按摩脚和手，帮助缓解开始出现的肿胀和僵硬.
As her liver continued to fail, her kidneys did too. 几天后, 在紧急寻找捐献肝脏的过程中，瑞莉接受了透析治疗以维持生命.
Splitting a donor liver to create the right match
霍普回忆说:“他们告诉我们，‘这必须是一个完美的肝脏——她还是个小女孩。’.
然后, 那天下午, she and her husband received the news that a potential match had been found. “The liver came at the perfect time,霍普说. “If it didn’t, I don’t think Raylee would be here today.”
Dr. Kaldas headed out to perform the surgery, 从已故的成年捐赠者那里获得肝脏，并将其分成两部分:一部分给瑞莉, and one for another patient at 皇冠hga025大学洛杉矶分校健康. The smaller part would be for Raylee, given her size.
“The liver is the only organ in the body that can grow again,” Dr. Kaldas解释. “And that really is the only reason we’re able to split it in this manner.”
这个过程, 称为原位分裂, is a unique strength that not every transplant program has, 他说. “This was not a bread-and-butter pediatric liver transplant. 能够将她的肝脏分离出来并将其用于她——一个病得很重的孩子——这是一项复杂的手术，并不是每个项目都能做到的.”
While the in-situ split was taking place, 皇冠hga025大学洛杉矶分校的医疗团队和瑞莉的父母都在努力让她活下去.
“我们打开保暖包，把它们放在瑞莉的身上，让她保持温暖，这样她的心率就会回升,霍普说. “She had at least 60 heating pads on her. And when they’d cool off, we’d crack more open and replace them. They’d approved the liver in the middle of the night, and we were just trying to keep her alive until the surgery.”
早晨一到，瑞利就被推进手术室，开始了第一次手术.
“当一个孩子病得如此严重时，你希望尽快为他们提供一个正常工作的肝脏。. Kaldas解释.
这意味着Dr。. 卡尔达斯首先必须切除瑞莉的原生肝脏，并通过将其连接到她身体的血管来植入新的肝脏, 让它发挥作用, 然后再做第二次, 一旦炎症和急性症状消退，更多的小手术来连接胆管. 在此期间，瑞莉的切口暂时关闭，她仍然保持镇静.
Then came the long wait after the second surgery for Raylee to wake up. 一天过去了，然后是两天. “They were starting to think she might have brain damage,霍普说.
然后, finally, she opened her eyes. “They weren’t yellow anymore; her scalp had even been yellow and wasn’t anymore,” s他说. “Finally, all of it was done – it was just like a miracle.”
2月. 2023年9月9日，距离她第一次感冒大约两个月后，Raylee终于回家了.
恢复正常
从那时起, there have been some minor complications, 包括胆管中的疤痕组织，需要临时支架，然后是胆管袋. Raylee wore the bile bag all last summer, 使胆汁排出体外，同时支架使胆管保持开放和愈合.
In addition to monthly appointments and labwork at 皇冠hga025大学洛杉矶分校健康, Raylee每个月都要在当地一家机构进行抗体注射——在随后的几天进行两次5小时的注射. She also takes several medications in the morning and at night.
Because of her health situation, Raylee, is enrolled in kindergarten through her local district but learns at home, where she’s visited daily by a teacher.
她的哥哥, 谁现在11岁了, is also now doing independent study, 因为在瑞莉就医期间，她经常缺课. Raylee的另一个兄弟姐妹，现在2岁，在Raylee住院时只有7个月大. “I didn’t see them for over a month straight,霍普回忆道. 虽然他们和其他家庭成员相处得很好，但“这真的影响了我们所有人.”
但现在，如果你看看瑞莉，“你不会认为她经历过这些，”霍普说. “She’s brave – she’s a warrior and doesn’t complain about anything.”
Raylee, who recently turned 6, has also maintained a bond with Dr. Kaldas.
“She calls him ‘Freddie,霍普说. “We send him updates and pictures constantly.”
Dr. Kaldas also makes an effort to stay in touch with Raylee’s family. “如果我有一段时间没收到他们的消息，我会去看看Raylee怎么样了，”他说. “It makes my day to see her doing well. 她是最可爱的孩子. 看到她正常而充实地生活和享受生活，真是一种荣幸. That is what liver transplantation is all about.”
