Table 2

Case-by-case summary of diagnoses, complications result in readmission and symptoms

Identifier¹	Diagnosis	Complication	Symptoms
FR01	Single-ventricle disease (not HLHS)	Right diaphragm palsy with plication	Respiratory distress
FR02	HLHS	Wound infection (emergency sternal wound debridement)	Reduced feeding ++vomiting Abdomen ‘not quite right’ (respiratory distress)
FB03†	Transposition of the great arteries (plus or minus other features)	Out-of-hospital cardiac arrest (cause unknown)	Collapsed at home after a feed No other symptoms
FB04†	HLHS	Sudden collapse at home. Died in A&E	Excessive crying and screaming Collapsed at home
FB05†	HLHS	Aspirated at home	Reduced feeding ++vomiting Dry nappy
FB06†	Ventricular septal defect plus significant medical comorbidity	Sudden collapse at home	Slight cough
FR07	Single-ventricle disease (not HLHS)	Blocked left shunt (urgent redo)	Respiratory distress Recessing chest, Purple fingertips and lips Did not notice first time but symptoms pointed out at routine scan at local hospital
FR08	Tetralogy of Fallot	Blocked shunt (urgent central shunt)	No obvious symptoms Low sats detected during home visit
FR09	Transposition of the great arteries (plus or minus other features)	Resection of aortic aneurysm	No obvious symptoms Mother felt something was wrong but did not know what it was ‘mother's instinct’
FB10†	Single-ventricle disease (not HLHS) and significant medical co morbidity	Aspirated at home	Breathing Pale colouring ++vomiting Crying Found in the night in respiratory distress
FB11†	HLHS	Sudden collapse at home. Died in A&E	Excessive crying Unable to settle
FB12†	Single-ventricle disease (not HLHS)	Blocked shunt	Breathlessness noted by paediatrician 2 days before, appeared ‘normal’ to parents Sleepier after feeds Screaming and unable to comfort Collapsed at home
FB13†	HLHS	Blocked shunt	No obvious symptoms Routine vaccinations day before and following this: More lethargic than usual Diarrhoea in night Deteriorated over the course of the day Respiratory distress ->collapsed at home
FB14†	Anomalous coronary artery from pulmonary artery	Sudden collapse at home. Died in A&E	Sweating++ and vomiting after feeds, ‘Spelling’ intermittently (pale/blue/grey lips) Quiet and weak in the AM Grunting/straining sounds Started screaming during feed and collapsed
FR15	Single-ventricle disease (not HLHS)	Severe mitral regurgitation and left ventricular failure	Reduced appetite Lethargic Vomiting Cough ‘Grunting’ breath sounds
FR16†	Single-ventricle disease (not HLHS)	Pacemaker pocket infection and dehydration	++crying and restless at night Rapid breathing Blue face/hands/lips Recessing under ribs
FB17†	Single-ventricle disease (not HLHS)	Sudden collapse at home. Died in A&E	Appeared ‘agitated’ and generally less settled Taking less feed in one go Slight cough Routine vaccinations week prior to death. Collapsed during feed
FB18†	Single ventricle disease (not HLHS)	Sudden collapse at home. Died in A&E	More ‘emotional’ and ‘moody’ More difficult to comfort Easily tired Breathless on activity Napping more during daytime More unsettled at night Blue hands and feet at times Vomiting in hot weather Sweating Woke in night crying, vomiting and short of breath, then screamed and collapsed
FR19	Transposition of the great arteries (plus or minus other features)	Readmitted for coarctation repair	High blood pressure picked up at local review resulting in readmission to tertiary centre No clinical signs observed
FR20	Total anomalous pulmonary venous drainage	Increasing left upper pulmonary vein stenosis, ongoing tachypnoea and hepatomegaly with increased right heart pressures secondary to increased pulmonary venous pressures	General ‘grumpiness’ Mother feeling that something was not right High rate of breathing Vomiting

Broad diagnostic grouping have been used to preserve the anonymity of patients with rare conditions.
†Indicates that the child is deceased.
HLHS, hypoplastic left heart syndrome.