Katherine and Nate, parents of Joey and younger son Benjamin (3). Joey was diagnosed in-utero with severe holoprosencephaly (brain malformation) and died 2 weeks after birth.
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A diagnosis in-utero of holoprosencephaly.
Considering the option of terminating the pregnancy: “We felt we wanted to let this little life be whatever God wanted it to be.”
Decision-making about quality of life, with no judgement: “The medical field has advancements that our ethics haven’t quite caught up with.”
Perinatal palliative care “got to know us and really heard our hearts. They counseled us through the birth practices.”
“We didn’t think we would leave the hospital [following his birth].”
“It was very weird to have a newborn with a DNR paper on our fridge. . . It was one of the most uncertain times we could ever be in as humans.”
Our newborn’s end of life: “his life was short, beautiful, what it was meant to be.”
“I would be lying if I said it didn’t rattle our faith in God . . . I think it’s OK to have Why questions and not have perfect clarity.”
Finding support: “Our faith community really held us up.”
Grief: “Have grace with your spouse.”
The anxiety about having more children. “The way I have coped is just to assume the worst.”
“Because Joey lived for two weeks, we spend those two weeks (with his little brother) celebrating his life.”