Table 2 Clinical data on CMC participating in this study
Interview no. | Congenital or acquired disease | Clinical presentation and diagnosis (if known) | Technological support at discharge | CMC score* |
|---|---|---|---|---|
1 (A) | Congenital | Suspected genetic syndrome (global developmental delay, microcephaly, epilepsy, pulmonary hypertension, mono-kidney) | Percutaneous endoscopic gastrostomy tube feeding | 4 |
2 (B) | Congenital | Deletion of chromosome 8 and duplication of chromosome 7 (global developmental delay, congenital pelvis abnormality with micturition and defecation problems, pulmonary hypertension) | Pulse oximeter, intestinal washing, percutaneous endoscopic gastrostomy tube feeding | 4 |
3 (C) | Acquired | Progressive intellectual and neurologic deterioration of unknown cause | Tracheostomy, 24/7 invasive mechanical ventilation | 4 |
4 (D) | Congenital and acquired | Congenital arthrogryposis multiplex and acquired brain injury | percutaneous endoscopic gastrostomy, tracheal tube, night time mechanical ventilation | 4 |
5 (E) | Congenital | Down syndrome (tracheomalacia of unknown cause, sleep apnea) | Non-invasive ventilation, pulse oximeter | 4 |
6 (F) | Congenital | SNC2A mutation with severe developmental delay and epilepsy | Nasogastric tube feeding, oxygen | 4 |
7 (G) | Congenital | Partial duplication chromosome 9q, deletion chromosome 7b. Marfan phenotype. Multiple dysmorphies (micrognathia, frontal bossing, macrodactyly). Digestive tract varices caused by portal hypertension due to vena porta thrombosis | Nasogastric tube feeding, pulse oximeter | 4 |
8 (H) | Acquired | Acute flaccid myelitis at the age of 7Â years, due to an Enterovirus D68 infection | Tracheostomy, 24/7 invasive mechanical ventilation | 4 |
9 (I) | Congenital | Gastroschisis requiring multiple surgeries | None | 4 |
10 (J) | Congenital | Diaphragmatic hernia | Tube feeding, oxygen, pulse oximeter | 4 |
11 (K) | Congenital | Oesophageal atresia and tracheomalacia of unknown cause | Tube feeding, continuous positive airway pressure | 4 |
12 (L) | Congenital | Diaphragm paralysis of unknown origin (respiratory failure) | Mechanical ventilation, tube feeding, | 4 |
13 (M) | Congenital | Spinal Muscular Atrophy with Respiratory Distress type 1 | Mechanical ventilation on demand, oxygen, tube feeding | 4 |
14 (N) | Congenital | VACTERL association: vertebral anomalies/anorectal malformations/cardiovascular anomalies/tracheoesophageal fistula/renal anomalies/limb defects, bronchopulmonary dysplasia, epilepsy | Mechanical ventilation, oxygen, tube feeding | 4 |