| Reduce distress |
“I remember crying almost throughout the rest of my pregnancy and asking myself if I did anything wrong … I had already lost my first pregnancy so it was a lot to bear. My husband wasn't around throughout the period and I just had to stay strong.” Parent 10 “Lots of fear, insecurity, worry … I didn't have the slightest clue about such a severe heart problem and to know that my daughter had it was very distressing. On top of everything else, having just moved to a new country, for me to get this news, the language was the hardest thing. I didn't know my way around the big hospital and to know that I had to be there for one to two months was very depressing.” Parent 110 (translated from Spanish)
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| Reduce social isolation |
“My husband and I didn't know anyone with a heart baby. Everyone we knew had healthy kids. They complained about things that we didn't have the time or energy to even think about. Even the people we thought we could count on couldn't understand. Some even pulled back completely.” Parent 15 “I went to almost all of my appointments alone. My doctor never asked me why I was alone. I would have liked for them to be more involved with my husband. For me it was really hard. I cried a lot because my husband wasn't with me.” Parent 106 (translated from Spanish)
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| Increase parenting self-efficacy |
“I felt completely out of control. The next half of my pregnancy was completely in the doctors’ hands and I no more had a say … I felt like all my decisions were no longer mine and I was just going through the motions being told what to do and when to do it.” Parent 39 “I don't think I fully felt prepared for the road ahead. I was not prepared for a feeding tube, giving daily shots to our baby and the possibility of surgery on day 2. This was all so new to us and we were also new parents as well. It was so challenging and very overwhelming … And in the first couple days after our son was born, my wife was at another hospital recovering from a C-section. So as a brand new dad who had never changed a diaper, to be there with my son in the hospital was hard.” Parent 4
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| Increase hope |
“For me, having faith was not praying that her heart would magically become whole … it was knowing that God is faithful even if I were to lose her. That her time on earth was not in vain. And that I would love her with all of my heart regardless of what may happen in the future.” Parent 31 “In my hours of internet research I came across the fact that [Olympic athlete] was born with [the same] defect … We still had so many challenging emotions, but knowing that someone could overcome that defect and be a great surfer, skater, and Olympic snowboarder was at least a ray of hope that she would not necessarily spend her whole life ‘packed in cotton’.” Parent 5
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