My Name Was Charlie Gard

2017 ◽  
Vol 42 (11) ◽  
pp. 1-4
Author(s):  
Gerald D. Coleman ◽  
Keyword(s):  
Intensive Care Unit ◽  
Mitochondrial Dna ◽  
Intensive Care ◽  
Neonatal Intensive Care ◽  
Genetic Condition ◽  
Street Hospital ◽  
Great Ormond Street Hospital ◽  
Sufficient Energy ◽  
Mitochondrial Dna Depletion ◽  
Mitochondrial Dna Depletion Syndrome

My name was Charles Gard, but everyone called me Charlie. I was eleven months old when my parents decided to end a contentious legal fight and allow me to die. I was born in West London on August 4, 2016. My dad, Chris, is a postman and my mom’s name is Connie. They are still young, only in their thirties. At birth, I seemed to be developing normally, but by October, it was apparent that I was not gaining weight. I was then admitted to the neonatal intensive care unit at London’s Great Ormond Street Hospital, one of the world’s leading children’s hospitals, and treated for encephalomyopathic mitochondrial DNA depletion syndrome, a rare genetic condition which prevents cells from producing sufficient energy to maintain normal bodily functions. Experts on my form of MDDS, called RRM2B, unanimously agreed that there was no cure or treatment. At the time of my death on July 27, 2017, it was thought that only sixteen children globally have this condition.

The Psychosocial Aspects of Feeding in the Neonatal Intensive Care Unit and Beyond

2019 ◽  
Vol 4 (6) ◽  
pp. 1507-1515
Author(s):  
Lauren L. Madhoun ◽  
Robert Dempster
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Neonatal Intensive Care Unit ◽  
Hospital Discharge ◽  
Neonatal Intensive Care ◽  
Oral Feeding ◽  
Medical Attention ◽  
Primary Role ◽  
Speech Language Pathologists ◽  
The Family

Purpose Feeding challenges are common for infants in the neonatal intensive care unit (NICU). While sufficient oral feeding is typically a goal during NICU admission, this can be a long and complicated process for both the infant and the family. Many of the stressors related to feeding persist long after hospital discharge, which results in the parents taking the primary role of navigating the infant's course to ensure continued feeding success. This is in addition to dealing with the psychological impact of having a child requiring increased medical attention and the need to continue to fulfill the demands at home. In this clinical focus article, we examine 3 main areas that impact psychosocial stress among parents with infants in the NICU and following discharge: parenting, feeding, and supports. Implications for speech-language pathologists working with these infants and their families are discussed. A case example is also included to describe the treatment course of an infant and her parents in the NICU and after graduation to demonstrate these points further. Conclusion Speech-language pathologists working with infants in the NICU and following hospital discharge must realize the family context and psychosocial considerations that impact feeding progression. Understanding these factors may improve parental engagement to more effectively tailor treatment approaches to meet the needs of the child and family.

Acoustic environment at a neonatal intensive care unit

2019 ◽  
Author(s):  
M Gaspar ◽  
S Yohasenan ◽  
F Haslbeck ◽  
D Bassler ◽  
V Kurtcuoglu ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Neonatal Intensive Care Unit ◽  
Neonatal Intensive Care ◽  
Acoustic Environment

Role of Sildenafil in the Treatment of Persistent Pulmonary Hypertension of Newborn (PPHN) - Should it Be Withdrawn from Market of Bangladesh due to Threat of being Misuses

2020 ◽  
Vol 35 (2) ◽  
pp. 100-104
Author(s):  
Maksudur Rahman ◽  
Mohammad Abdullah Al Mamun ◽  
MAK Azad Chowdhury ◽  
Abu Sayeed Munsi
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Neonatal Intensive Care ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cardiac Intensive Care Unit ◽  
Cross Sectional ◽  
Cardiac Intensive Care ◽  
Hospital Protocol

Background: Recently it has been apprehended that sildenafil, a drug which has been successfully using in the treatment of PPHN and erectile dysfunction in adult, is going to be withdrawn from the market of Bangladesh due to threat of its misuses. Objective: The aim of this study was to see the extent of uses of sildenafil in the treatment of PPHN and importance of availability of this drugs in the market inspite of its probable misuses. Methods: This cross sectional study was conducted in neonatal intensive care unit (NICU), special baby care unit (SCABU) and cardiac intensive care unit (CICU) of Dhaka Shishu (Children) Hospital from June, 2017 to May 2018. Neonates with PPHN were enrolled in the study. All cases were treated with oral sildenefil for PPHN along with others management according to hospital protocol. Data along with other parameters were collected and analyzed. Results: Total 320 patients with suspected PPHN were admitted during the study period. Among them 92 (29%) cases had PPHN. Male were 49(53 %) cases and female were 43(47%) cases. Mean age at hospital admission was 29.7±13.4 hours. Based on echocardiography,13(14%) cases had mild, 38 (41%) cases moderate and 41(45%) cases severe PPHN. Mean duration of sildenafil therapy was 11.9±7.1 days. Improved from PPHN were 83 (90%) cases. Mortality was 10% (9). Conclusion: In this study it was found that the incidence of PPHN is 29% among the suspected newborns. Sildenafil is successfull in improving the oxygenation of PPHN and to decrease the mortality of neonates. DS (Child) H J 2019; 35(2) : 100-104

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