Bruns Deborah A
Southern Illinois University Carbondale, Department of Educational Psychology and Special Education, Carbondale, IL 62901, USA.
Adv Neonatal Care. 2010 Feb;10(1):25-31. doi: 10.1097/ANC.0b013e3181cbf54e.
To provide information about neonatal experiences for newborns with full trisomy 18 (t18).
Mothers of 21 newborns with full t18 (13 survivors; 8 who died prior to mothers' participation in the study).
Mixed method, descriptive, online survey.
Subjects completed an online survey. Data were downloaded into an SPSS database. Descriptive statistics were used to analyze resulting data.
Subjects' responses on Tracking Rare Incidence Syndromes survey.
Newborns presented with syndrome-related physical characteristics (eg, low-set ears, small jaw) and medical conditions (eg, heart defects). Gestational age was generally older than what is described in the existent literature. In the NICU, newborns were provided with a variety of equipments (eg, nasal cannula, pulse oximeter) and received treatments including blood transfusions and echocardiograms. Data also indicate longer survival rates (103.3 months for survivors, 37.5 months for nonsurvivors) than that described in the literature.
Data indicate presence of common presenting physical and medical characteristics and varied medical assistance to newborns with full t18.
提供有关完全性18三体综合征（t18）新生儿的新生儿期经历的信息。
21例完全性t18新生儿的母亲（13例存活；8例在母亲参与研究前死亡）。
混合方法、描述性在线调查。
对象完成在线调查。数据下载到SPSS数据库中。使用描述性统计分析所得数据。
对象在追踪罕见发病率综合征调查中的回答。
新生儿表现出与综合征相关的身体特征（如低位耳、小下颌）和医疗状况（如心脏缺陷）。胎龄通常比现有文献中描述的要大。在新生儿重症监护病房（NICU），为新生儿提供了各种设备（如鼻导管、脉搏血氧仪），并接受了包括输血和超声心动图在内的治疗。数据还表明，存活率（存活者为103.3个月，非存活者为37.5个月）比文献中描述的要长。
数据表明完全性t18新生儿存在常见的身体和医疗特征，以及多样化的医疗救助。
