Chinese Journal of Nursing ›› 2024, Vol. 59 ›› Issue (7): 859-864.DOI: 10.3761/j.issn.0254-1769.2024.07.014

• Intractable Diseases Care • Previous Articles     Next Articles

Rescue and nursing care of a neonate with severe laryngomalacia complicated with breath-holding attack

CUI Shangqing(), GUO Hongqing(), WU Jinhua, HUO Qiugui   

  • Received:2023-09-11 Online:2024-04-10 Published:2024-04-09
  • Contact: GUO Hongqing

1例重度喉软骨软化病合并屏气发作新生儿的急救与护理

崔尚卿(), 郭宏卿(), 吴金花, 霍秋桂   

  1. 215000 苏州市 苏州大学附属儿童医院新生儿重症监护室(崔尚卿,郭宏卿,霍秋桂),护理部(吴金花)
  • 通讯作者: 郭宏卿
  • 作者简介:崔尚卿:男,本科,主管护师,E-mail:501524959@qq.com

Abstract:

To summarize the rescue and care of a case of breath-holding attack caused by congenital contractures of limbs and face,hypotonia,and developmental delay(CLIFAHDD) syndrome. Key points of nursing:early identification and intervention of breath-holding attack in CLIFAHDD syndrome,and implementation of rapid reactive rescue;implementing individualized developmental care measures to avoid stimuli that induce breath-holding attack;paying attention to the assessment of oral feeding ability,strengthening the exercise of oral feeding ability and nutrition management;strengthening perioperative diversified airway management to prevent postoperative complications;the monitoring of early neurological and motor system development,and early start of rehabilitation care;doing a good job in health education for caregivers to help them master the first aid treatment and growth and development assessment methods in the event of a breath-holding attack. After 53 days of hospitalization,the patient was discharged. After being discharged from the hospital for more than 1 month,the patient had breath-holding attack 2~4 times a day. After being discharged from the hospital for more than 2 months,the patient had no breath-holding attack,and only had occasional convulsive seizures during sleep,which could be relieved spontaneously.

Key words: Rare Diseases, Laryngomalacia, Breath Holding, Gene, Mutation, Neonatal Nursing

摘要:

总结1例重度喉软骨软化病合并先天性肢体和面部挛缩、肌张力减退和发育迟缓综合征引起屏气发作新生儿的急救与护理。护理要点:早期识别与干预屏气发作,实施快速反应性抢救;避免屏气发作的诱发因素,实施个体化发展性照顾;重视经口喂养能力的评估,加强经口喂养训练和营养管理;强化围手术期气道管理,预防术后并发症;做好照护者的健康宣教,使其掌握屏气发作时的急救处理措施。经过53 d住院治疗,患儿好转出院。出院1个月随访,患儿屏气发作每天2~4次;出院2个月随访,患儿无屏气发作,仅睡眠期间偶有惊厥发作,可自行缓解。

关键词: 罕见病, 喉软骨软化病, 屏气, 基因, 突变, 新生儿护理