Perinatal Hospice is the process offered to mothers/families to offer support when they learn that their baby has a life limiting condition and choose to continue with the pregnancy.
You can learn a great deal about this at perinatalhospice.org…there are sections for both families and caregivers.
“Perinatal Hospice” vs “Perinatal Palliative Care” these terms are used by various people in various ways, but this is how I define them…
When I say “Perinatal Hospice” Im speaking of the weeks/months of preparation ahead and prep for delivery as well as the immediate after birth support and care, normally at the moms bedside. I use the phrase “Perinatal Palliative Care” to mean the efforts to keep the baby comfortable after birth – in most cases, this is very parental with the baby being born weak and spending their whole life in the arms of those who love them. A baby’s care can get a little more complex or a lot more complex involving Nursing, Neonatology, Lactation Consultations, Home Hospice. Another professional could define these phrases differently and be justified in doing so. In reality the caregivers in any neonatal palliative care situation need to be able to assess for confirmation of presumptive diagnosis, change the care plan as needed based on infants condition, & comfort care that may or may not include medical and pharmacologic measures.
These babies are most often born in a state of shut-down with shallow or absent breathing and slow heart rates…breathing slows and stops then heart rate slows and stops gently. Death is often so peaceful that it is almost hard to declare an exact time of death (although one will have to be estimated).