Variable

Median (IQR) or N (%)

IN HOSPITAL OUTCOME or COMPLICATION (N = 165)

Mortality

21 (13.7)

Pre-operative septal intervention

13 (7.9)

Age at surgery (days)

5 (3, 7)

Unplanned intervention

52 (31.5)

Delayed sternal closure

94 (57.3)

Open chest days

4 (3, 5)

Cardiac arrest

16 (9.8)

ECMO

19 (11.6)

Other surgery

20 (12.2)

Post-op mechanical ventilation (days)

6 (4, 7.75)

Total length of any respiratory support (days)

15 (9, 27)

Arrhythmia

43 (26.5)

Thrombotic event

29 (17.2)

Diaphragm paralysis

13 (8.0)

Vocal cord paralysis

21 (12.9)

Chylothorax

14 (8.5)

Stroke

6 (3.7)

Seizure

8 (4.9)

Necrotizing enterocolitis

8 (4.9)

# of X-rays

21 (15, 30)

X-rays per hospital day

0.63

# of ECHOs

8 (6, 11)

ECHOs per hospital day

0.25

DISCHARGE OUTCOME or COMPLICATION (N = 132)

Discharged home after first stage

132 (80.0)

Length of NICU admission (days)

33 (21, 53)

Feeding regimen at discharge (N = 132)

PO + NG

72 (54.5)

PO

37 (28.0)

GT

10 (7.6)

 NG

13 (8.8)

Technology at discharge

97 (73.5)

Number of discharge meds

5 (3, 8)

Number of discharge appointments

6 (4, 7)

LONG-TERM OUTCOMES (N=109)

# of emergency room visits in 1^st year of life

1 (0,2)

# of catheterizations in 1st year of life

1 (1, 2)

# of surgeries in 1^st year of life

2 (2, 3)

Total # Hospital days in 1^st year of life

60 (37, 93)

Total # of Hospital days in 1^st year of life (not including NICU admission)

14 (6.8, 34.3)

Transplant

16 (14.4)

Age at transplant (years)

3 (1.3, 3.6)

Protein losing enteropathy

7 (8.0)

Plastic bronchitis

1 (1.0)

Mortality at time of chart review of entire cohort

35 (21.2)

Mortality age < 1 year

29 (82.9)

Mortality age > 1 to < 3 years

2 (5.7)

Mortality > 3 years

4 (11.4)