THE IMPORTANCE OF PALLIATIVE CARE IN THE FOLLOW-UP OF A CHILD WITH PATAU SYNDROME: CASE REPORT

Abstract

Introduction: Patau syndrome, also known as trisomy 13, is considered the third most common autosomal trisomy. Diagnosis is made by analyzing the chromosomes and clinical characteristics. Many patients with the syndrome require surgery and palliative care, and may present significant developmental delay. Objective: To report the clinical case of a male patient diagnosed with Patau syndrome, systematically monitored by an interdisciplinary follow-up program since the age of six months, with emphasis on clinical evolution and monitoring of global development. Methodology: Data collection was performed through analysis of clinical records, including laboratory and imaging tests, in addition to the application of standardized instruments for assessing child motor development, such as the Alberta Infant Motor Scale (AIMS) and the Hammersmith Infant Neurological Examination (HINE). Results: The patient presented neurological, cardiac, urinary, and visual alterations. The results obtained demonstrate the relevance of palliative care in improving the quality of life of both the patient and his/her family. Conclusion: Considering the unfavorable prognosis, the early
introduction of palliative care was essential for this patient, ensuring comprehensive support for both the patient and his family, as well as effective communication among all those involved. The interventions provided by the multidisciplinary team should be guided by realistic therapeutic goals and an individualized care plan tailored to the patient's clinical condition and specific needs.