Casey and Brian
A prenatal diagnosis of heterotaxy: how palliative care helped parents continue the pregnancy and manage uncertainty
Parents Casey and Brian describe learning at the 20-week ultrasound that their baby had heterotaxy with an unformed heart. “No one really offered what if you had her and met her. It was really– this is how terrible things look. And it’s because no one wants you to go through the hardest thing you’ll ever go through. You should definitely have this baby and watch her die. You know, no one wants to say that to you.” They decided to follow the baby’s lead and continue the pregnancy; and found palliative care to help them through what they wanted. “They support you whatever your choice ends up being. They will be there for you, whatever path you choose.”
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A prenatal diagnosis of heterotaxy: how palliative care helped parents continue the pregnancy and manage uncertainty
Decision-making over 14 months: Our goal was always for her to feel loved and be out of the hospital, at home, as much as possible.
Our faith was already there waiting for us, which made a big difference
We always knew what we wanted for her . . . and so we let her go.
