Table 2

Summary of results from parent’s survey

Survey questionPatient 1Patient 2
What is your relationship to the child that underwent omphalocele repair?Grandmother and mother filled the survey together as both are involved with raising the childMother
Prior to the surgery, what expectations did you have in regard to outcome?Death while pregnant. Shortly after birth, a difficult postoperative recovery with many long term-complicationsDeath (while pregnant)
Are you satisfied with the surgery? (0=no; 10=completely satisfied)1010
How did the overall outcome compare with your expectation prior to surgery? (0=worse; 10=better)1010
How do you think your child is doing now? (1: not very well; 10: very well)108.5
Has having an omphalocele negatively affected your child’s quality of life? (1: very much; 10: not at all)98.5
Has having an omphalocele negatively affected your quality of life? (1: very much; 10: not at all)88
Qualitative comments‘[My child] is a very active toddler.’
‘[My child] is just as active as the other children and is not bothered at all by the scar, as a caregiver I am more concerned and sometime slow [my baby] down out of fear.’
‘[My child] eats less food/drink at the time’ and ‘friends commenting negatively on the tummy scar.’
‘We are very thankful to Dr [surgeon] and Victoria General hospital for the loving care.’
‘[My child] is just as vivacious and curious as any other toddler, outpaces the 6-year-old brother and has physically exceeded the twin since 6 month of age.’
‘It took less time for the omphalocele to go down than expected.’