A PreNatal/Fetal Diagnosis
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Perinatal palliative care: Being able to do intensive care and palliative care simultaneously is possible.
A prenatal diagnosis of heterotaxy: how palliative care helped parents continue the pregnancy and manage uncertainty
“Advice to my past self at the 20-week ultrasound: It’s your decision at the end of the day.”
A Physician defines Perinatal Palliative Care; and how families get referred.
Trisomy 13 and 18 as an example of some parents now asking, “What if we did try to push a little further?”
A life-limiting fetal diagnosis: Trisomy 18 as an example of supporting parents’ choices.
Perinatal palliative care: “Parents can hold that [uncertainty] space better than we clinicians do.”
The uncertainty of fetal diagnosis is dramatic. We don’t box parents into a decision.
A life-limiting fetal diagnosis: Conversations about terminating the pregnancy; Palliative care as a bridge to maternal fetal medicine.
A life-limiting fetal diagnosis: Empowering but not burdening the parents as decision-makers.
Medical Uncertainty: What the data says vs. what is going to happen with this particular baby.
An MD on addressing a parent’s fear of making the wrong decision for their child.
Shared Decision-Making: When parents ask the doctor for a recommendation.
Potential pathways for unborn babies with a life-limiting fetal condition: a perinatal palliative care doctor describes
Most people adapt: “Parents craft their story whether their baby lives or dies based on who they’ve become after they’ve birthed this child.”
Fear of regret: "I have a lot of compassion for people making these decisions "
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.”