Amy Wright Glenn

Best care practices

Best care practices

Care Practices for Pregnancy Loss Support 

Created by participants in the January 2016 training

Holding Space for Pregnancy Loss

Compiled by Amy Wright Glenn, founder of

The Institute for the Study of Birth, Breath, and Death

 

Self care for bereaved parents

Acknowledge that “getting out of bed” is an act of creativity and resilience

Discard expectations of how, or for how long, one should grieve

Explore healing arts such as: yoga, meditation, massage, watsu, acupuncture, cranial sacral therapy, homeopathy, and dream work

Take time to be alone in nature

Read spiritual, mythological, religious literature as inspired

Journal/writing

Create a scrapbook for baby

Explore visual art, crafts, and especially weaving as knitting with rhythm helps stimulate the production of oxytocin

Consider connecting to others with similar experiences — join a support group/community

Take all the time needed for silence, screaming, crying, laughing, and story telling

Could create murals, paintings, and dolls — and fill them with dreams

Craft and decorate the funeral casket as appropriate

Create or purchase a special piece of jewelry and/or clothing to wear in honor of one’s baby

One doesn’t have to be “okay” — allow the feelings of sadness and grief to freely flow

Plant tree or garden

Explore music therapy – listen, sing, dance

Own the freedom to define one’s own experience – don’t be limited by medical definitions such as a miscarriage, stillbirth or infertility

Light candles

If religious, pray

Take one’s time to pack up, display, store, or give away baby items

Try not to let one’s partner’s grief offend – especially if it seems to be too much or too little — realize people can grieve in completely different ways

Create meaningful rituals to mark one’s child’s life and death

 

Doula care for bereaved mother

Offer silent companionship and acceptance of her mental state without trying to resolve or “fix” her grief

Empathize, but don’t say you know what she is feeling

If appropriate for gestational age, encourage photos to be taken of baby to honor and remember baby

Support the mother in singing to baby, holding baby, washing baby, dressing baby, and introducing baby to family members
No mother should have to be separated from her baby before she is ready – be an advocate for her

Suggest mother considers placental encapsulation after loss

Provide a resource list of support groups, therapists, home funeral guides, for families facing loss or who experience loss.

Massage, touch, and provide physical support during labor and birth and also in postpartum visits

Facilitate the creation of a list of empowering requests that a bereaved mother can make of her family/friends (almost in the spirit of a postpartum support plan)—a personalized list of “ways you can best support us in this time of loss and processing.”

“Laying on of ears” (listening)

Explain to women who’ve had loss what the stages of feelings /hormone drop how it will effect them.

Develop a postpartum checklist for the grieving parents i.e. bleeding, lactation grieving in their own time and way, etc.

Comb her hair while listening to her speak

For breastfeeding mothers who are expecting infant death, prepare mother for milk donation or weaning

Add books on perinatal and infant loss to one’s professional library and loan to mothers/families as appropriate

Suggest herbal tinctures for perineum healing and peace/calm

Let the mother know that not everyone may want to talk about it and acknowledge that it is hard to not get angry but sometimes people may be experiencing their own grief and not feel they can support her

Keep checking in, listening, asking, being curious — that’s all — no timelines

Try to be aware of power imbalances between you and the bereaved mother – for example, pay attention to one’s body position and consider sitting next to the mother if she is resting in bed so that one is not standing over her etc.

Allow support to be on the mother’s terms and let her know that at any point she is free to offer suggestions/corrections with regard to what is working in terms of touch, massage, silence or conversation

Let her know that it is perfectly fine to simply cry without a need for an explanation

Try to be aware of any judgments you are bringing to the choices a bereaved mother is making with regard to how she choses to process her loss — notice one’s thoughts and acknowledge them without letting it negatively influencing the support given

Come with love — bring love into all the support given

Be prepared for difficult questions and try to think of what to say ahead of time — one doesn’t need to have an exact script, but the more prepared one is in moments when people bring up tough issues can only strengthen the ability to support

Be very comfortable with silence

Model gentleness in tone, energy, and breath — focus on keeping one’s body in a comfortable, relaxed posture as tense bodies can cause a tense atmosphere

Reach out in gentle ways to let them know that you are thinking of them. Ask if you can help in specific ways (Can I bring you dinner tonight? Can I come sit with you tonight?)

Find ways to guide relaxation — this could be through touch, like a soft touch to a part of their body that is tense (such as her jaw) or through massage

If a grieving mother is not interested in being touched, offer to guide relaxation through a body check or a more scripted guided relaxation

Create some kind of memento from the birth and give it to the mother

Offer practical help in setting up postpartum support such as meal preparation, laundry, sibling care etc.

 

Doula care for bereaved father/partner

Encourage the father to receive support and honor time to grieve

Offer up resources regarding grief groups specifically designed for fathers

Encourage partner to provide mother with simple services – bring/refill drinks, make snacks

Provide handouts about the different stages of grief — how it is not a linear process etc., on how men/women grieve differently, and how to deal with sex

Provide handouts featuring specific checklists, sample scripts, e-mail templates so that a bereaved family doesn’t need to recreate the wheel

Honor the father’s personal expression even as he may “handle it differently” than the mother

Check in individually to see how the partner is coping and if he or she needs anything separate to the mother.

It may be useful to provide the partner with have flash card size notices offering respectful suggestions of do’s and don’ts (visiting etiquettes) as they visit the grieving mother/family

Do one’s best to know about legal, employment, and ceremonial options — talk both father and mother through them and be supportive of the decisions made

Create some kind of memento from the birth and give it to the partner/father

  

Care for Siblings

Include children in rituals/ceremonies

If deemed appropriate, allow siblings to see the body of their little sister or brother directly — to care, kiss, and mourn — so they can have their own memories

Listen openly as children talk about their feelings

Purchase children’s book on the topic of death/dying/baby loss – therapeutic story telling

Children need to feel needed — to be useful – encourage their helpful expression – for example, have children make a stocking with the baby’s name during the holiday season

Acknowledge loss and life by displaying memorabilia that reminds the siblings and others of the baby that was –this could be pictures or namesake elements or sentimental items

Include the lost baby from the number of children in the family

Encourage play therapy

Teach children it’s healthy to talk about the death of a baby or a miscarriage to children

Allow teens – who can often be frank in their expression – to fully embody their expression as they are also entitled to their own feelings.

Encourage connection with animals – very healing – especially for children

Have sibling give something to be buried with baby — photo of themselves, drawing they made, flower, etc.

 

Care for extended family

Help the extended family to understand that the mother, father/partner, and siblings can “grieve out” to anyone in outer circles, but it is not helpful to “grieve in” to them

Encourage extended family to find avenues of expressing their own grief – especially if it is intense – so as not to “over grieve” the immediate family

Include extended family in ceremony making – consider a ritual where family members bring a bead and make a mala in honor of the lost baby

Create groups for family members who may need a space to process this experience

Mark one’s grief and remember the child’s birthday–send a card, make a phone call to the immediate family

Encourage them to help care for the gravesite — bring trinkets etc.

Provide cards that give extended families examples of words that are healing vs. words that are hurtful

Encourage extended family to support parent(s) in taking whatever space and distance needed from holidays and family/social events

 

Care providers care for self

Remember to care for yourself

Keep physically well while providing support — eat enough, drink plenty of water, use the bathroom when needed, take a stretch break etc.

Find a trusted support person or system where one can process (without breaking confidentiality) the stories witnessed

Adopt a practice that helps to find physical release of the energy of holding space for deep sorrow — yoga or dance etc.

Acknowledge that no doula can be the right support person for everyone who needs support

Attend bereavement trainings and stay abreast of current research on the topic

Continue membership with professional development organizations/institutes and consider working with a mentor through the first year of holding space for pregnancy loss

Create one’s own “stillbirth plan,” tuck it into a pocket of one’s birth bag to take to all births so that the little things that matter don’t get overlooked 

 

Medical/hospital care practices

Specific training on best practices with regard to perinatal/infant loss is needed for all staff attending bereaved parents: doctors, nurses etc.

Educate healthcare professionals on the intersections of loss – the other factors like infertility, molar or ectopic pregnancy, other health complications

Set up trainings to help staff understand that there may be more to the experience than the loss of the child – there may be fears for the mother’s health, for example, or grief and fear at what the future holds in terms of fertility

Provide doula support within the hospital or health care system immediately and continuously through the process – from diagnosis to birth and beyond

Be sure all staff is informed of perinatal/infant loss so one contacts a mother/father about an expected procedure without realizing the child has died

Consider denoting baby loss families rooms with a special teardrop on a leaf picture — this alerts all staff, even dietary, housekeeping, etc. that there is a grieving family inside — so they can act with appropriate sensitivity

Kindly and clearly offer up explanations of what happened and why

Be willing to be uncomfortable for the comfort of those experiencing loss or grief

Make continued connection so they know family is getting the support the need and is not alone

Allow bereaved to spend as much time as possible with their child

Offer alternatives to autopsy

Allow funeral home to pick up deceased child from parent’s hospital room rather than the hospital morgue

Highlight the practice of pumping breast milk after loss for donation

Do not refer to a baby as “it,” say his or her name. If one doesn’t know the name, ask

Remind staff to use whatever language mom/partner is using around “baby” “fetus” etc.

Provide resources, names, phone numbers, emails, websites, organizations etc. Be sure to talk about them, don’t just hand the papers and leave

Demonstrate empathy for the loss

Touch a hand, shed a tear, provide explicit permission to all staff members that it is alright to feel, be human, to listen and be involved

Offer clear information on what to expect physically: whether induction of labor, surgical procedures, medical termination with medications, etc.

Offer pain relief that is appropriate and sufficient for the mother’s needs

Don’t send a woman home to deliver her early baby alone

Honor a laboring mother’s choices — whether they want help with lactation or not, whether they want to let labor begin naturally or not, etc.

With regard to stillbirth, provide baby with clothing to be dressed with, blanket to be wrapped in, and quality infant casket

Encourage parents to hold, cuddle, explore, kiss, bathe, dress, smell, dance with, rock, child etc.  Parents may not have thought of doing these healing actions if they are not suggested

If possible, encourage the family to take part in the process of making mementos; don’t just do them for the family — have the father/mother take the prints, make the molds, lock of hair, etc.

Offer up organic oil for parents to massage the baby with after they wash her or him

Offer bereaved families the option of professional photography services, nursing staff can offer to take photos

Surgical management can still provide handprints/foot prints – do so

Issue ‘honorary birth certificates’ for those who would like one

Have a gentle and supportive communication protocol in place for when baby is taken from the mother/family

Hospital has board certified or clinically trained and supervised multi-faith chaplain available to serve client and family’s emotional and spiritual needs, offering meaningful ritual

Hospital has psychologists or licensed clinical social workers on staff

Hospital has collaborated with at least one local mortuary that has offered cremation services for infants at cost

Hospital itself, or local charity or church, has collaborated to cover cremation costs for low-income clients

Have training on what language to use with families enduring loss especially in the ER

Support groups and regular meetings for families in the NICU as families need immense support to navigate the NICU grief even without death of the child

Remove restrictions on accessing support and care by providing lists – Why?

Some hospitals believe that by providing a list of resources that the hospital is liable and therefore forces the family to find resources on their own

If possible, offer aromatherapy to those interested

Bypass the maximum allowed guests in the room

Keep grieving family in the same room so they don’t have to move to a postpartum unit

Provide sacred, still, silent spaces — such as hospital chapels — to go for prayer and meditation

Offer clear and honest information on loss/stillbirth from the beginning of pregnancy

For smaller hospitals without chaplaincy resources, create a volunteer program with skilled practitioners who can be called to come in like a chaplain but specifically for infant loss

Have a supply of cooling beds so that the baby’s body can be placed in so that parents can spend as much time with the baby at the hospital as they need

Offer to provide music

Keep a list of volunteer “parent mentors” who have gone through a similar loss in the past and can be a listening ear and companion in grief for those newly experiencing it

Provide a healing environment with a sofa, chairs, and refreshments.

Provide a weekly follow up for at least a month to ensure that family is coping with the loss of their child/children

Create more awareness about home funerals as a healing option for bereaved families

Give short and clear info about possibilities and what happens next

 

Support of friends

When at a loss, consider saying: “I don’t know what to say, but I’m listening”

Offer to set up a charity or donation spot of choice in honor of baby

Talk about the lost child — the more we can normalize death in our society the easier it will be for everyone to move through it with grace

Offer gifts of massages, energy work, etc. for the grieving family

Remember bereaved friends on Father’s and Mother’s Day

Create a memory garden featuring stones, butterfly etc.

Bring mother food specific for iron and blood loss

Arrange friends to be in touch with bereaved parents a couple times a day by email and phone. Just little notes to say, “You don’t need to respond, just wanted to tell you I love you…”

Pool money together to have bereaved parent’s house cleaned

When parents are ready offer to help remove, store, donate etc. items from baby nursery

Arrange for one point person who helps with the coordination or communication — that way the family doesn’t have to tell the news over and over

Ask to see photos of the baby, hear the story, and visit the baby’s grave

Share personal reflections (if applicable) about the pregnancy and/or the baby

Create a piece of artwork of the baby for the parents

Fix meals — fill fridge and freezer with healthy, nutritious, delicious foods that the family loves

Watch children thus allowing mother and father/partner time alone for the following stillbirth/miscarriage

Invite family or just mom over for coffee and to talk

Say the child’s name

Give a basket/box of gift items that bereaved parents would find helpful — journal, chocolate, special stuffed animal to remember her child

Give an ornament for a Christmas tree as an example of a gift for special holidays etc.

Remember, even if the mother received a lot of support immediately after following the death, she will need support as she travels along the journey

Offer to attend doctor’s appointments and all other appointments — take notes

Don’t tell the grieving how to feel or what to do

Come to the services or ceremonies if invited

Don’t be afraid you’ll make the parents think of the baby – they already think of their missing child every day

Please listen to the story over and over again

Avoid hurtful phrases such as: “You can have another child,” or “God needed another angel,” or “At least you didn’t get to know them, it’s better than losing an older child” or other similar words

Call or drop in and ask: “What do you most need today and how can I help?”

Hugs can also come from texts, phone messages or emails – idea being that there’s no energy input asked or required from the couple, just to be on the receiving end

Treating the mother to a beautiful and commemorative henna tattoo on her belly

Recognize there is nothing you can say to “make it better” – just listen

Speak about the lost child months, even years, later – help keep the child’s memory alive

 

Support of neighbors/community

Offer lawn care, housework, or babysitting to allow bereaved parents to have time together

Offer to bring mail in, weed garden, tell other neighbors the news so they aren’t speculating

Seek out resources about miscarriage, stillbirth, infant loss through local library and if they are lacking, request that they be purchased

Normalize the practice of having photos of lost babies hanging in homes

Support home wakes/funerals

Fundraisers to meet family’s financial needs so they can make room for grief

Physical retreat for a place for grieving with other families

Offer a phone service, where volunteers who have been through a pregnancy loss (and have been trained in companioning care) call the woman, and offer to talk to her, as someone who has been through something similar

Encourage local yoga studios to donate classes for bereaved parents

Encourage local massage therapists to offer services for discounts for bereaved parents

Hold an annual ceremony for parents who have experienced perinatal loss

Have a place where people can put flowers

Create community-writing circles where all can come together and write their stories together and grieve together

Openly talk about perinatal and infant loss; talk about loss in a general sense

If talking about mothers or parents, make a point of including parents who have experienced loss, e.g. “For anyone with children, whether they are living or have died…” Acknowledge that loss is a reality.

 

Support of religious/spiritual institutions

Including the baby, honored by name, in the thoughts/prayers of members

Display an “Angel Baby” quilt on a memorial wall/walkway – make a physical place in the religious family for babies lost to miscarriage and/or stillbirth

Offer bereaved family ideas of rituals that have worked for other families

Provide a place to anonymously (or not) post writings about grief and loss

Offer up trainings for the congregation on grief as so often well-meaning people offer phrases and even scriptural verses to families that are meaningless to that family, and possibly even hurtful

Teach the companioning model of care

Organize an interfaith/international group of women, birth workers and elders/spiritual leaders to hold sacred space and pray for those impacted by pregnancy and/or infant loss

Invite hospice chaplains and/or death midwives to the congregation to speak about how they can create a death support system for their members

Coordinate members to deliver meals

Remind members to acknowledge anniversary or milestone dates

Include bereaved mothers on events like Mothers’ Day, and fathers on Fathers’ Day

Provide a weekly grief share program serving anyone dealing with any loss

Create interfaith ceremonies that bring people together across religious distinctions honoring the fact that pregnancy and/or infant loss impact all communities

Host a faith-based support group

Host a yearly service for families that have experienced loss of a baby, and it is open to any parent, of any faith tradition

Provide training on grief and bereavement to leaders of religious/spiritual community

Have religious/spiritual leader of church/mosque/temple/gurudwara etc. reach out as a support person

Assign a “doula” to the family to stay with them during church and to run interference if it gets to be too much or people need to be gently re-directed with their comments

Set time aside once a week, so parents impacted by loss can gather and fellowship openly

Host a book groups to read and discuss books on death/dying in general and perinatal loss in particular

Have a special person on staff specifically trained in this area to attend to bereaved families and train the rest of the staff in appropriate language

Encourage all members to avoid the use well meaning but empty platitudes when talking with bereaved parents

Offer a fireside chat open to the whole congregation on grief and how we can support each other through it

Educating leaders and congregations about the facts of perinatal loss

Shift away from beliefs/language that implies families are being punished when they experience a loss

Understand that the bereaved may not find comfort in “God’s” role in this situation

 

Support of schools

Teachers coordinate the class to write a note or create cards for grieving family

Gently reach out to children who have experienced loss and let students know it’s okay to feel sad and that the adults in the school are there for them

Offer counselors to students who may be suffering a loss of sibling

Include the topic of perinatal/infant loss in grief training for teaching staff

Excuse absence for familial support of pregnancy/infant loss

Teach students in age-appropriate ways regarding the frequency of how often miscarriages and stillbirths occur

If the deceased baby was named, use this in class when discussing the topic with the older sibling

 

Birth professionals care practices

Have childbirth educators bring up the subjects of miscarriage, stillbirth, and infant loss as part of regular childbirth education in a sensitive, honest, and gentle way that highlights the companioning model of care

Create a group that meets either in person and/or online to discuss the emotional and clinical aspects of attending a stillbirth — invite all birth professionals to join

Research which local hospitals need basic training in bereavement support and provide these hospitals with this support

Hosting a round table discussion to define the types of loss that can exist through the prenatal/maternal phase in a woman’s life

Shared stories of loss on professional websites/blogs

Maintain lists of doulas willing to support loss to accompany women who are sent home to miscarry alone

Follow through with families — stay connected, attend the services afterward, remember to acknowledge the birthdays ahead

Take care to notice what email lists your loss clients are on — for example, do they want to be invited to the reunion picnic with all the new babies?

Care for each other as professionals – especially when one attends a stillbirth – reach out to each other and offer support

Host and provide professional development trainings

Teaching the community about the Companioning Philosophy

Lending library

Normalize infant death in death-support communities like hospice

Hospices openly advertise they support pregnancy loss and should be prepared to do so

Offer education and support for bereaved Mothers who are interested in pumping and donating

Holding a monthly group for perinatal loss and lactation

Educating hospital staff and community workers on the benefits of pumping post birth of a loss

Be open to communicating with other organizations, loss support should not be a competition.

 

Funerals/burials best practices

Present all options to the parents and honoring the requests of the grieving parents

Home funerals should be a normalized choice — watching the post-mortem transition is a powerful way to confront and move through grief

Allow regular visitation of body, home visits

Do not rush the family

Think outside the box – explore all options – to support family

Suggest ceremony or memorial acts such as: lighting candle, lanterns, balloons, writing letters, visiting burial site, making a scrapbook, gifting meaningful jewelry/photographs/artwork

Offer burial, disposition, cremation services and/or spaces for free or at a substantial discount

Having size and theme-appropriate casket options available

Offer up possibility of parents crafting their own casket

Having sacred spaces for bereaved parents to spend time with their infant prior to burial or cremation if they are not comfortable or able to take the child home for visits

 

Employment/Workplace Care Practices

 Annual walk to remember the loss of babies

If the parents work at a place that offers paid time off, organize to allow co-workers to donate paid time off hours so the couple can have more time to grieve if they need/want it before going back to work.

Provide coverage for counseling for bereaved individuals, and for co-workers, if necessary

Provide private, safe space for mom or dad to grieve/cry if grief overtakes them — this could be a private room, an unoccupied office, etc.

If the work community is close, and ONLY the parents supports it, sharing the birth/death announcement with the staff so that everyone is in the know

Send a card in the mail: “Thinking of you”
Have HR or management share articles and education for co-workers of bereaved parents; things like: “Ten things to say and not to say to someone who had a miscarriage/perinatal loss”

Support mom to pump breast milk as any other lactating woman

HR professionals reach out and acknowledge loss without being intrusive

Encourage managers to be gentle, empathic, and empower employees to take time upon death of a loved one

Sending flowers to a memorial service is fine, an acknowledgment, but is sometimes an “easy pass” – real face-to-face connection is so much more powerful

HR department helps facilitate the resolution of insurance challenges that may ensue from a stillbirth in terms of medical coverage

Apply maternity leave laws to mothers who miscarry or experience a stillbirth

Allow the partner/father to take needed time off of work — they are often neglected as they may not have been “hospitalized” etc.

 

Legal Care Practices

Protect time off for miscarriage, fertility treatments

Women who experience pregnancy loss should be granted maternity leave

Partners should be covered as well by family leave

With loss free access to bereavement support should be available

Legislation to protect all lactating and bereaved mothers must be put in place, including paid bereavement leave, a pumping space, paid pumping breaks

Allow for induction at any point in pregnancy for situations of fetal demise

 

Social Media Support

Use social media to bring attention to these issues — share stories relating to perinatal and/or infant loss — get the conversation going.

Create and join Facebook groups specific to supporting bereaved parents

Write informational and education articles in local publications regarding pregnancy loss, issues and companioning philosophy to raise awareness

Offer kind comments to bereaved through social media such as: “I am here for you” “holding space for you” “sending healing energy” “it’s safe to grieve with me” “here is my # — day or night”

Help present — through one’s influence in the media — the whole spectrum of experiences reflected back to infertility, baby loss, proportionately to the way it is actually experienced

Tell stories of one’s own experience with loss

Create a “story corp” subcategory and questions for bereaved families dealing with perinatal loss so that those stories are captured and represented in the Library of Congress