Before the baby’s birth

For parents who have entered perinatal palliative care during pregnancy, memories made during the pregnancy often become very important. These memories provide a record and documentation of the pregnancy and may represent a time when the baby was still ‘safe’ and are a way of honouring their baby. Parents and family/whānau should be encouraged to gather mementos and engage in experiences as they may have planned before their prenatal diagnosis. For example, an audio recording of baby’s heartbeat may be an important memento for families.²⁸

Parents face numerous decisions at a time of shock and grief and sometimes in the face of prognostic uncertainty. All these decisions are difficult, and some have significant ethical components. For example, the birth plan or parenting plan needs to include plans for assessment and care of the baby and cover considerations such as newborn bonding and skin-to-skin contact, warmth, hydration, feeding and lactation, management of respiratory distress, and comfort measures for their baby such as oxygen, medications, and pain relief.¹⁶

Feelings of uncertainty, responsibility, and guilt about decisions made may have long-term implications for parents. It is important that parents and family/whānau are assured that decisions and plans can be revised.

Decisions about giving birth will be similar to those in Section 3: Perinatal loss care. It is important for healthcare professionals to consider specialised childbirth classes for parents who plan to have a vaginal birth.¹⁷ A driving factor for mode of birth may be the wish to have time together with a live born baby. This may also be an important consideration for religious or cultural ceremonies.