Barr M, Cohen M M
Am J Med Genet. 1999 Jun 25;89(2):116-20.
Parents of children with holoprosencephaly often have been told that their children will die within days or weeks. When this does not happen, they are distrustful of the information they have received and want to know what they can really expect and how they can cope with the many problems these children have. We have recorded our experiences and gleanings from the literature with regard to survival and performance of these children. Survival data were obtained from 62 cases of alobar holoprosencephaly known to us or to our colleagues. Performance data were obtained on 35 survivors, by direct examination and/or detailed parent questionnaires and interviews.
患有前脑无裂畸形的儿童的父母常常被告知，他们的孩子会在几天或几周内死亡。当这种情况并未发生时，他们便会对所获得的信息产生怀疑，想知道他们孩子的真实预后情况以及如何应对孩子所面临的诸多问题。我们记录了自己的经验以及从文献中收集到的有关这些儿童的生存和表现情况。生存数据来自我们或同事所知晓的62例无脑叶型前脑无裂畸形病例。通过直接检查和/或详细的家长问卷及访谈，获取了35名幸存者的表现数据。
