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Care Around Stillbirth and Neonatal Death (CASaND) Clinical Practice Guideline

Memory making and spending time with baby

The time parents will have to spend with their baby is limited so every contact with their baby is precious.3

For many parents and families/whānau, creating lasting and meaningful memories is an important way of honouring their baby. Having a continuing bond with their baby may allow parents to maintain an enduring connection with their child who is integrated in their everyday lives and social relationships. Continuing bonds are associated with more positive bereavement adaptation.40

Healthcare professionals can support parents by offering opportunities for parents to spend time with their baby and engage in acts of caregiving and parenting, such as bathing and dressing, and reading and singing to their baby.22,41 Spending time and engaging with their baby can help parents to create a social identity for the baby, and for themselves as parents, while simultaneously providing an opportunity to say goodbye.41 Parents may also value opportunities to take their baby out of the clinical environment and into natural settings.22

“At our service we have coolamons ready for babies to rest in. The families bring in a blanket and we put that down first. Bub is placed in gently and the whole room gets quiet and it feels so special. Families say they feel like their Bub’s spirit is connected to Country when they are laying in the coolamon, made from the trees, holding them peacefully.”

Healthcare professional quote from the Jiba Pepeny (Star Baby) booklet.

“At first, I was really afraid when I thought about spending time with our baby. I talked with my midwife who was able to tell me what other parents have found helpful and to make suggestions.”

Parent quote from the Guiding Conversations booklet.

Healthcare professionals need to ensure that parents feel guided, supported, and prepared to meet their baby and engage in memory making that is meaningful to them, and to the extent that they wish.22,41 Parents may initially feel emotionally unprepared, hesitant, or fearful of seeing their baby, including how to approach, touch, and hold him or her. Parents report being grateful to healthcare professionals who actively support them to engage in memory making.42,43 It is important to take time to explore with parents their concerns and preferences, and areas of uncertainty or apprehension regarding parenting activities. It is also essential for healthcare professionals to be aware of and facilitate important cultural, religious, and spiritual practices. For example, Māori families (including extended family/whānau members) will often gather and say prayers with the bereaved and baby at certain times of the day or night.

Parents of twins, triplets, or multiple babies

Parents of twins, triplets or other multiples may experience conflicting emotions when one or more babies has died and one or more survive. It can be difficult for parents to think about and plan to spend time with a baby who has died while also caring for and spending time with the surviving baby or babies. Healthcare professionals can support parents in their decision making by validating the loss of their baby and not solely focusing on the surviving baby or babies. It is important that parents are cared for by healthcare professionals who have training in supporting parents who experience a loss from a multiple pregnancy. The Guiding Conversations booklet has information for parents around the loss of multiple babies.

Consensus-based recommendation 3.11

Validate parenthood and support memory making by:

  • discussing options and exploring parents’ concerns and preferences around parenting activities
  • offering all parents the opportunity to see and hold their baby immediately after birth, including skin-to-skin contact with their baby and supporting them through the process
  • normalising and supporting parenting activities such as bathing and dressing their baby
  • using gentle and caring language and actions when interacting with the baby
  • asking parents how they would like you to refer to their baby (for example by name)
  • providing parents information about their baby (for example weight, length, hair colour) using the same tenderness and respect afforded to any baby
  • providing opportunities to involve siblings, grandparents, and other family/whānau members
  • offering parents and family/whānau the opportunity to engage in parenting activities and memory making more than once, while remaining respectful of their decisions.

Consensus-based recommendation 3.12

Ask parents and family/whānau throughout care about cultural needs regarding perinatal loss practices and handling of their baby’s body.

  • Always ask parents and family/whānau permission before handling their baby.

Consensus-based recommendation 3.13

Prepare parents for seeing and holding their baby by giving information about the baby’s physical appearance, size, tone, and temperature.

  • Sensitively answer parents and family/whānau members questions and explore concerns.
  • Discuss preferences for seeing their baby, including use of special blankets, hats, or clothing.

Evidence-based recommendation 3.14

Evidence quality: moderate confidence

Enable parents and family/whānau to spend as much time as they wish in private with their baby who is dying or who has died, including the option to take their baby outside into the natural environment, home, or to another place important to the family.

  • For a baby who has died, discuss practical matters with parents when they are ready, including care and transport of the baby’s body, use of ’cold cots’, and relevant legal issues.
  • For a baby with a life-limiting condition, consider and offer the option of perinatal palliative care in the family home, involving palliative care teams if available and ensuring parents have the support they need.

Consensus-based recommendation 3.15

For parents of twins, triplets, or other multiple births:

  • provide parents with opportunities to spend time with and make memories with their baby or babies that have died
  • support parents in their decision making and acknowledge that there may be mixed feelings around spending time with a baby who has died, while also caring for and spending time with the surviving baby or babies
  • provide parents with culturally and linguistically appropriate resources and support options for the loss of a baby or babies from a multiple pregnancy.

Collection and creation of mementos

Supporting parents in creating memories through collecting mementos is highly meaningful for bereaved parents and family/whānau who often have a strong desire to maintain a lifelong connection with their baby. Mementos often include photographs, hand and footprints, casts/moulds of hands and feet, baby identification bracelets, and special clothing.13,44-46 Memory boxes are also highly valued and can contain a range of tangible items.47

Mementos provide evidence to affirm the life of the baby and the role of the parent.51

In Australia, Red Nose’s Treasured Babies Program and Angel Gowns Australia provide bereaved families with gifts of handmade clothing and Angel boxes for their baby. Miracle Babies Foundation also provides memory boxes for newborn loss. Bears of Hope, Possum Portraits, and Huggable Hearts also support bereaved families with mementos and keepsakes for lasting memories. In Aotearoa New Zealand, Baby Loss NZ, Sands New Zealand, and A Star is Born provide memory making services.

“It’s a validation of being a parent… that this person was here on this planet, and that he lived. He was here very briefly, he had a huge impact on our lives, and that presence is recognised and celebrated in the pictures.”

Bereaved mother.44

High quality photographs and video recordings provide lasting and valuable memories for many bereaved parents and families/whānau. Photographs and videos can be an essential means of:

  • validating their baby’s existence, their parenthood, and their baby’s place in the family unit38,48,49,44,50,51,44,52,53
  • providing opportunities to share their baby with others and facilitate difficult conversations (for example to help siblings understand the loss)51
  • supporting creation of a family legacy and a continuing bond64  
  • creating a permanent and tangible record that can provide parents with comfort and reassurance and relieve fears of forgetting their baby over time.64

If a professional photographer is not available, healthcare professionals can support parents in taking photographs and videos. Parents appreciate natural and candid photos that capture irreplaceable moments and activities associated with parenting, and the small details about their baby’s appearance.50,51 See tips for healthcare professionals on taking bereavement photos by Heartfelt.

In Australia and Aotearoa New Zealand, Heartfelt is a volunteer organisation of professional photographers who provide photographic memories free of charge for families/whānau who experience perinatal loss.

“Because parents left the hospital without a child, the photographs took on an increased importance, often becoming their most valuable and irreplaceable possessions.”

Healthcare professional.44

For parents who may be unsure or apprehensive about seeing their baby, photographs can be used by healthcare professionals as a way of preparing parents to see and spend time with their baby.9 The experience of taking photographs can also create positive memories by providing parents with special moments to hold their baby, spend time together as a family, and, for some, foster a sense of normalcy.64

All aspects of memory making should be parent led. It is crucial that healthcare professionals do not initiate collection or gathering of mementos without parents’ involvement or permission (for example cutting a lock of hair or dressing the baby). Some parents’ preferences, values, and wishes for memory making may be tied to long-established cultural customs and tradition. For example, the baby not being left alone at any time,54 ways of handling their baby’s body and placement of limbs, and items important for burial (such as clothing).55-59

It is important to acknowledge and support parents who choose not to engage in parenting activities or memory creation. Discussion of memory making and spending time with the baby should be carefully approached with the parents and family/whānau by a trusted healthcare professional.60-62 Parents’ decisions must be respected. In addition, it is essential that healthcare professionals are aware of processes for storing mementos (for example baby identification bracelets) for parents who may wish to collect them later when/if they are ready.

“I just didn’t feel able to spend time with my baby. But a midwife told me how she cared for him and how he looked. She described how she carefully wrapped our son and placed him in a cot, and the details of his face and hands. I am so grateful to the midwife for allowing me to see my baby through her eyes.”

Parent quote from the Guiding Conversations booklet.

Consensus-based recommendation 3.16

Offer and facilitate opportunities to gather tangible mementos of the baby (for example photographs, identification tags, cot cards, locks of hair, handprints and footprints). Memory making should be an option that is offered more than once to parents/family/whānau.

Consensus-based recommendation 3.17

Be aware of local processes for supporting parents and family/whānau who initially choose not to keep mementos. Ensure mementos are stored securely and labelled appropriately in maternal or neonatal records for future access.

Consensus-based recommendation 3.18

Support and facilitate parents to take a mix of photographs and videos of their baby, including with family/whānau.

  • Ensure photos are taken with sensitivity and are of highest possible quality.
  • Facilitate access to a professional photographer who has experience in compassionate bereavement photography, if desired by parents.

Commemorative rituals

Healthcare professionals have an important role in supporting parents and family/whānau to make decisions about and arrange bereavement rituals that meet their cultural, religious, and spiritual needs. These rituals may include blessings, naming services or baptism, and burial or cremation. For example, the placenta holds great significance and importance in Indigenous cultures. Many Aboriginal families have ceremony for the placenta, mostly burying it on the bub’s Country. In Māori culture, it is customary for families/whānau to return to the earth the umbilical cord (pito) and afterbirth (whenua) by burying them at home (turangawaewae).

“On the day of Bub’s funeral, Uncle made the fire out on the grass in the backyard. He made it big and I held my Bub in my arms and we passed over the smoke, again and again and again until it felt right to stop. I felt like it helped Bub’s spirit go over, you know? That process of cleansing. It felt like it helped me too. We were all there together, cleansing so we could send my son off peacefully.”

Parent quote from the Jiba Pepeny (Star Baby) booklet.

Evidence-based recommendation 3.19

Evidence quality: moderate confidence

Offer and facilitate opportunities for commemorative rituals and acknowledge cultural, religious, and spiritual customs important to families/whānau.

Consensus-based recommendation 3.20

Sensitively discuss with parents and family/whānau that burial or cremation is a legal requirement for a baby who dies at greater than 20 weeks gestation or weight of 400 g. Provide parents with:

  • information (including written) that includes the range of available options for burial, cremation, and funeral, and support parents/family/whānau in their decision making
  • contact details for relevant services
  • information about available financial support.
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