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Parent panel describes benefit of perinatal palliative care and bereavement programme

11 May 2017

In this video, parents who experienced the loss of their baby shortly after birth discuss the impact of the Perinatal Palliative Care and Bereavement Program at Children’s Hospital of Philadelphia (CHOP).

In this panel discussion, families cared for by the program, housed in Children's Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment, share their feelings about what it was like preparing to deliver their baby with a life-limiting fetal diagnosis. They talk about how a coordinated Perinatal Palliative Care and Bereavement Program helped them prepare for an anticipated perinatal loss, and how the medical, nursing and psychosocial services provided at Children’s Hospital supported them through an extremely difficult time. Specialists from the Hospital briefly discuss the different roles team members provide for the pregnant patient, her partner, and their family.

The CFDT’s Perinatal Palliative Care and Bereavement Program focuses on supporting families expecting babies diagnosed with life-threatening illnesses from the point of diagnosis, throughout the pregnancy, at the time of delivery, and beyond the death of their baby.  

One panelist described what happened to her and her husband after hearing of their unborn baby's diagnosis, 

"We were encouraged very early on to terminate. That is not what we wanted for our child. 

But as we navigated preparing for his birth and his death and the challenges that we would face afterwards, we were on the receiving end of two very different types of care. Some that caused us extensive stress and made a horrible situation even worse, but other care that completley exceeded our expectations and changed our lives for the better."

At CHOP, obstetricians, maternal-fetal medicine specialists, neonatologists, nurses, chaplains, social workers, child life specialists and clinical psychologists are available to support families when coping with a fetal and/or neonatal death. 

Their Perinatal Palliative Care and Bereavement Program offers pregnancy options counseling, prenatal care services, guidance through the medical choices available at birth, palliative care birth planning, direction and access to community resources to help with the grieving process, coordination of spiritual support, sibling preparation, family memory-making opportunities, and more.

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