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Table 1 Summary Content of TTTS Stories, Pregnancies and Outcomes

From: Identifying families’ shared disease experiences through a qualitative analysis of online twin-to-twin transfusion syndrome stories

  

N

%

Author of story

 Mother

36

80.0

 Father

7

15.6

 Maternal Grandmother

2

4.4

Pregnancy Type

 Twins

43

95.6

 Triplets

2

4.4

Year of pregnancy (median, range)

2006 (1998–2011)

 

Diagnosed after birth

2

4.4

Weeks at Diagnosis (mean, sd)

18.6 (3.2)

 

Treatments

 Nutritional Supplementation

3

6.7

 Amnioreductiona

12

26.7

 Surgical

  Cerclage

1

2.2

  Septostomy

1

2.2

  Fetoscopic selective laser ablation surgery

26

57.8

 Selective Reduction

2

4.4

 Immediate delivery

3

6.7

 Wait and see until viability

1

2.2

Weeks at birth (mean, sd)

 Two plus live births

31 (3.6)

 

 At least one live birth

30.9 (3.9)

 

 No live births

24.0 (5.7)

 

Outcomes

 Live births

71

77.2

 Stillborn

21

22.8

 Survivors

66

71.7

Outcomes by familyb

 Two survivors

30

66.7

 One survivor

11

24.4

 No survivor

4

8.9

NICU stay by family (at least 1 live birth)

 Yes

31

75.6

 No

6

14.6

 Missing

4

9.8

Serious complication while in NICU by family

 Yes

12

38.7

 No

19

61.3

  1. aDoes not include amnioreductions that occurred during fetoscopic selective laser ablation surgery
  2. b2 triplet families’ outcomes: 1) one fraternal survivor, 2) a TTTS survivor and fraternal survivor