Original ArticlesLong-term follow-up of home mechanical ventilation in young children with spinal cord injury and neuromuscular conditions☆
Section snippets
Methods
All pediatric patients seen at RLANRC between 1980 and 2000 were included in the study if mechanical assisted ventilation had been initiated before the 6th birthday. Of the 46 patients, 7 were lost to follow-up. Of the 39 remaining patients, data were collected through retrospective chart reviews and telephone interviews. Data were collected for the sole purpose of this study. One of the physicians personally participated in the care of each patient. All patients were discharged from the
Results
A total of 39 children (28 boys) were included in the study; 23 children had neuromuscular diseases, including 7 with spinal muscular atrophy (SMA), 4 with nemaline rod myopathy, 3 with polio, 3 with congenital muscular dystrophy, 2 with demyelinating neuropathy, and 1 each with mitochondrial myopathy and myotubular myopathy. Two children had myopathies of unknown type. Sixteen children had spinal cord injuries (SCI): 14 C2 injuries, 1 C3, and 1 C4,5.
Of the surviving 31 children, the average
Discussion
Patients who were ventilator-dependent from the polio epidemics of the 1940s and 1950s began the era of home care for ventilator patients. Since that time, home care has flourished.19, 20 By 1987, it was estimated that 2000 ventilator-dependent children resided at home in the United States.21
Studies have been performed to determine the long-term outcome of ventilating infants with BPD.1, 2, 3, 4, 5, 6, 7, 8, 9 Studies also exist of older children with SCI and neuromuscular diseases,11, 12, 15
Acknowledgements
We thank the following people, who contributed significantly to the care of the patients in this study: William Boelter, MD, Jan Ensley, RN, Mary Janson, LVN, Thomas Keens, MD, Sheila Kun, RN, Eithne MacLaughlin, MD, Monique Margetis, MD, and Sally Davidson Ward, MD. We also thank William S. Linn and John Ortega for their help in preparation of the manuscript.
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Cited by (50)
Pediatric spinal cord injury with radiographic abnormality: the Beijing experience
2023, Spine JournalCitation Excerpt :Better understanding the injury characteristics of SCIWRA and SCIWORA may ultimately improve proposed treatment paradigms. Numerous epidemiological studies were conducted to examine the overall pediatric SCI population and specifically the pediatric SCIWORA population [43–95]. However, only one epidemiological study has been conducted to examine specifically the pediatric SCIWRA population or compare between SCIWRA and SCIWORA with three major limitations: first, the sample size was small with only 16 SCIWORA patients; second, the diagnostic practice was outdated with computed tomography (CT) and magnetic resonance imaging (MRI) performed only in one patient respectively; third, statistical analysis was performed only when comparing the differences in the likelihood of being hit by cars as the cause of SCI and the number of major trauma in other areas of the body in the initial accident [94].
Children Dependent on Respiratory Technology
2019, Kendig's Disorders of the Respiratory Tract in ChildrenHypotonia and Weakness: Levels Above the Lower Motor Neuron
2018, Volpe's Neurology of the NewbornInjuries of Extracranial, Cranial, Intracranial, Spinal Cord, and Peripheral Nervous System Structures
2018, Volpe's Neurology of the NewbornLong-term ventilation in children: Ten years later
2015, Revista Portuguesa de PneumologiaCitation Excerpt :In our first published series, concerning the use of domiciliary NIV during a six years’ period, 20% of 40 children included had suspended ventilation because they had improved or were cured: trachea/broncho malacia, macroglossia, diaphragmatic paresis and adenotonsillar hypertrophy associated with other situations.16 The main disorders included in the present study, such as NMD and CCHS, are much less likely to allow discontinuation of ventilatory support.11,12,15 We highlight how young the children of this series group were: 23% were younger than 1 year, compared with less than 10% in the Italian12 and French7 series.
Chest Wall and Respiratory Muscle Disorders
2012, Kendig and Chernick's Disorders of the Respiratory Tract in Children
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