Related Experiment Video
Updated: Jul 8, 2025
A Modified Sonographic Algorithm for Image Acquisition in Life-Threatening Emergencies in the Critically Ill Newborn
Published on: April 7, 2023
Patau and Edwards Syndromes in a University Hospital: beyond palliative care
Ligia Marçola1, Ivete Zoboli1, Rita Tiziana Verardo Polastrini1
1Universidade de São Paulo, Faculdade de Medicina, Hospital das Clínicas, São Paulo, SP, Brazil.
Insights
Newborns with Patau (T13) and Edwards Syndrome (T18) face high mortality and prolonged ICU stays, often with congenital heart defects. Palliative care is crucial for improving quality of life.
Area of Science:
- Neonatal Medicine
- Clinical Genetics
- Pediatric Cardiology
Background:
- Patau Syndrome (T13) and Edwards Syndrome (T18) are severe chromosomal abnormalities.
- Congenital heart diseases (CHDs) are common comorbidities in these syndromes.
- Neonatal intensive care unit (ICU) management presents unique challenges for these infants.
Purpose of the Study:
- To characterize the population of newborns with T13 and T18 and CHDs admitted to a quaternary care ICU.
- To describe the medical interventions, palliative care, and outcomes for these infants.
Main Methods:
- A descriptive case series was conducted.
- Patient records from January 2014 to December 2018 were analyzed.
- Infants with confirmed T13 or T18 karyotypes admitted to the ICU were included.
Main Results:
- 33 infants were identified: 27 with T18 (82%) and 6 with T13 (18%).
- High intrahospital mortality rates were observed: 83% for T13 and 59% for T18.
- Long median ICU stays were noted (29 days for T18, 25 days for T13), with 54% receiving palliative care.
Conclusions:
- Infants with T13 and T18 exhibit significant morbidity, mortality, and extended ICU care requirements.
- There is a need for multicentric studies to develop protocols for therapeutic proportionality and enhance patient/family quality of life.
Objective:
To describe the newborn population with Patau (T13) and Edwards Syndrome (T18) with congenital heart diseases that stayed in the Intensive Care Unit (ICU) of a quaternary care hospital complex, regarding surgical and non-surgical medical procedures, palliative care, and outcomes.
Methods:
Descriptive case series conducted from January/2014 to December/2018 through analysis of records of patients with positive karyotype for T13 or T18 who stayed in the ICU of a quaternary hospital. Descriptive statistics analysis was applied.
Results:
33 records of eligible patients were identified: 27 with T18 (82%), and 6 T13 (18%); 64% female and 36% male. Eight were preterm infants with gestational age between 30-36 weeks (24%), and only 4 among the 33 infants had a birth weight >2500 g (12%). Four patients underwent heart surgery and one of them died. Intrahospital mortality was 83% for T13, and 59% for T18. The majority had other malformations and underwent other surgical procedures. Palliative care was offered to 54% of the patients. The median hospitalization time for T18 and T13 was 29 days (range: 2-304) and 25 days (13-58), respectively.
Conclusions:
Patients with T13 and T18 have high morbidity and mortality, and long hospital and ICU stays. Multicentric studies are needed to allow the analysis of important aspects for creating protocols that, seeking therapeutic proportionality, may bring better quality of life for patients and their families.
More Related Videos
12:27Modified Laparoscopic Anatomic Hepatectomy: Two-Surgeon Technique Combined with the Simple Extracorporeal Pringle Maneuver
Published on: June 16, 2023
03:40Point-of-Care Ultrasound for Peripheral Veno-Arterial Extracorporeal Membrane Oxygenation Without Left Ventricular Venting
Published on: January 17, 2025
Related Concept Videos
01:25Continuing Care
01:21Tertiary Healthcare System
01:29Chronic Pancreatitis II: Collaborative Care
Assessment:
01:27Nursing Ethical Principles II
Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's...
01:19Restorative Care