Department of Pediatric Surgery, La Paz University Hospital, Madrid, Spain.
Department of Pediatric Gastroenterology, La Paz University Hospital, Madrid, Spain.
Pediatr Transplant. 2022 Aug;26(5):e14270. doi: 10.1111/petr.14270. Epub 2022 Mar 20.
MRS/MFS is a rare multisystem disorder with a poor prognosis. The high mortality rate of this syndrome is related to the severity of the associated gastrointestinal, pancreatic, and hepatobiliary conditions, as most of them are not amenable to conventional medical and surgical treatments.
We report the case of a Romani girl with all the key clinical features of MRS/MFS, and a review of cases reported in the literature. Our patient is a newborn from consanguineous parents who presented duodenal atresia, hypoplastic pancreas, gallbladder agenesis, and neonatal diabetes. Given the clinical suspicion of MRS/MFS, a genetic analysis was performed which revealed the presence of a homozygous variant in the RFX6 gene. During the course of the disease, the patient presented intractable secretory diarrhea and severe intestinal failure.
At 2 years of age, she underwent MVT of the stomach, duodenum, small intestine, colon, liver, and pancreas. There were no surgical complications. Histologic evaluation of the small bowel showed extensive patches of gastric heterotopia. After more than 10 years of follow-up, she had presented with normal gastrointestinal, hepatic, and pancreatic function. She has one of the longest survival periods in the literature.
Our experience suggests that multivisceral transplantation may be a promising option in select cases of MRS/MFS.
MRS/MFS 是一种罕见的多系统疾病,预后较差。该综合征的高死亡率与相关胃肠道、胰腺和肝胆状况的严重程度有关,因为大多数情况不适用于常规的医疗和手术治疗。
我们报告了一例具有 MRS/MFS 所有关键临床特征的罗马尼亚女孩的病例,并对文献中的病例进行了回顾。我们的患者是一对近亲所生的新生儿,患有十二指肠闭锁、胰腺发育不良、胆囊缺如和新生儿糖尿病。由于对 MRS/MFS 的临床怀疑,进行了基因分析,结果显示 RFX6 基因存在纯合变异。在疾病过程中,患者出现难治性分泌性腹泻和严重的肠衰竭。
在 2 岁时,她接受了胃、十二指肠、小肠、结肠、肝和胰腺的 MVT。没有手术并发症。小肠的组织学评估显示广泛的胃异位斑块。经过 10 多年的随访,她的胃肠道、肝脏和胰腺功能正常。她是文献中存活时间最长的患者之一。
我们的经验表明,多器官移植可能是 MRS/MFS 选择病例的一种有前途的选择。