After a family she was caring for recently experienced a pregnancy loss, Dianne realized there was a gap in her knowledge. “It was really an ‘ah-ha moment’ where I realized these families have unique care needs. In particular, those first words to someone whose baby has died, and how to respond compassionately to women and their families. I want to provide the best care I can when someone has a loss.”

Dianne was familiar with the Pregnancy & Infant Loss (PAIL) Network; some of her patients had used their peer-to-peer resources. When she learned about the network’s Compassionate Care Workshops for professionals, she jumped at the opportunity.

“I knew these workshops were exactly what our local health care and social services community needed,” says Dianne, who works as a member of a professional group serving five small communities with a combined population of about 4500.

A workshop was arranged for the northern community, covering grief, cultural safety and what to say and not say during a loss. Two facilitators were present, one a professional with experience caring for families who have had a pregnancy or infant loss, and one with lived experience of loss.  Another parent came from Kenora to share about her lived experience of loss.

The group quickly identified a challenge. Most women in the area do not deliver in Red Lake.  They travel to a variety of communities, including Dryden, Kenora, Thunder Bay or Winnipeg to deliver their babies. Hospitals sometimes don’t have a process for returning remains to the families’ local community, a huge stress for families anxious to arrange a memorial for their baby.

Together with facilitators, the group brainstormed ways to support families through the grieving process. Attendees proposed using an existing committee to develop a community plan to support families. A local committee marks Pregnancy and Infant Loss Awareness Day on October 15 each year.

“We are a very small community, and people don’t always want to talk about their loss and their grief with friends, family and neighbours who live here. For some, it can be comforting to have anonymity when speaking about your own experience and journey,” explains Dianne. Useful tips were provided accessing PAIL’s peer-to-peer resources available to families, linking them with others across Ontario who have had a loss.

Dianne says the session was jam-packed, and attendees particularly liked the focus on family experiences and memory-making.

“You can never have enough information. The workshop provided us with the tools to support and care for our local families. We are grateful,” says Dianne.

For more information and resources on supporting families, please visit PAIL. To see upcoming Compassionate Care Workshops, please visit here. If you have questions, please email pailnetwork@sunnybrook.ca or call 888-303-7245 (PAIL).

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Why was the Butterfly Garden event started?

The idea of having a butterfly garden was brought forward by a registered nurse in our Neonatal Intensive Care Unit (NICU). The staff in the Women & Babies Program care deeply about the bereavement care we provide. Having an annual memorial is our way of ensuring these families know that they are still in our thoughts; as are the babies they have lost. It is so important that we offer a sense of community as well as a space for reflection.

Who attends? Is it families who have recently lost a baby, or families where time has passed?

The Butterfly Garden Ceremony is open to any family who has lost a baby at Sunnybrook at any time in the woman’s pregnancy or thereafter. Family may include the bereaved mother or father but may also be a sibling, an aunt, uncle, gramma, grampa, or supportive friend. Families can remain on our email invite list and continue to come for as many years as they wish; and they often do. We welcome anyone for whom this event is important and healing.

Why are events like this important for families who have lost a baby?

The ceremony is important for so many reasons. Some do not feel well-supported or understood by friends and family and feel best understood by other members of this community. The ceremony is also an important way for some families to commemorate and acknowledge their child’s life and passing. The ceremony offers a safe space to let your tears flow and to feel accepted for however your grief is manifesting that day. Some families greatly value the care they received from Women & Babies Program staff. Sometimes, the staff here are the only people who met their child and who walked beside them through their darkest hour; so reconnecting with these people is very meaningful.

What tips can you offer for family and friends who have a loved one who has lost a baby?

We can feel really helpless when someone around us experiences a pregnancy or infant loss. Here are a few tips:

1. Take your lead from the bereaved couple as to how you can be supportive to them at this time. Listen. Instead of assuming what would be helpful and dropping off the fifth lasagna at their doorstep, start by asking “What would be helpful and supportive to you?”
2. Take your lead from them also in terms of how they are processing this life experience. For example, what language they use, and how they are making sense of this event if they can make sense of it at all. For example, do not tell them to “be strong” if they need to stay in a vulnerable, sad place. Do not tell them “everything happens for a reason” if this is not the language or way in which they are processing this. These comments can be hurtful.
3. People can be uncertain about whether to acknowledge a loss for fear they may upset the bereaved couple. Generally, I encourage people to consider the timing and context of their acknowledgement but I find that people do want their baby to be acknowledged. If the baby was named, use that name wherever possible. If you are uncomfortable speaking to someone in person, sending a card may be your best approach.
4. Remember that for many people, grief is forever. Never assume someone has “moved on” or that there isn’t still a place in that person’s thoughts for that baby. If you are close with the bereaved couple, consider checking-in months or years down the line, perhaps on an important holiday like the child’s date of birth or Mother’s Day to express to them that their loss, and theirbaby, is still in your thoughts.

What is the significance of a butterfly?

The butterfly is a long-standing symbol for perinatal grief. There are various reasons for this. Some note it is because butterflies are feminine and gentle. Others indicate that a baby may only be a part of one’s life a short while but has a great impact; like a beautiful butterfly we see in nature. Alternatively, the butterfly is considered a beautiful thing seen in nature that visits them and reminds them of baby’s life – like a ‘sign’ that baby is still present in our lives even after death. Finally, the butterfly is also a symbol of transformation much like families affected by perinatal loss are forever transformed.

The Butterfly Garden Remembrance Ceremony is held each September at Sunnybrook.
Details for the 2017 event can be found here.

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“We’ve all come to know the stages of grief — denial, anger, bargaining, depression and acceptance,” says Dr. Elie Isenberg-Grzeda, a psycho-oncologist at the Odette Cancer Centre. “There’s a tendency to think these stages go in order and are time-based. But the stages can happen in any order and at any time.”

So, even when you think you’ve accepted a loved one’s death and are done grieving, you might walk by your Dad’s dry cleaner and the sadness could come flooding back.

What can you do when you find yourself having a grief-filled day long after the immediate grieving of a loved one’s death? That really depends on you, Dr. Isenberg-Grzeda says.

Step one, though, is let yourself off the hook a bit.

“There is nothing abnormal about having a sad day after the death of a loved one – even months and years later,” he says. “But one thing that will definitely make you feel even worse is thinking something is wrong with you because you feel sad. Remember, sadness is part of the process. It’s ok to cry.”

If you find yourself flooded with grief, turn to the coping skills you have learned to help you through any time of stress or sadness.

“Distraction techniques can help,” he says. “Things like, putting on your favourite music playlist, or watching a TV show that can’t help but make you laugh or smile. You could take a walk, go for a run, ride your bike. Physical activity works as a distraction and also releases endorphins.”

These distraction techniques tell your brain, “We can keep going. We can do this,” Dr. Isenberg-Grzeda says.

“The process of saying to yourself, ‘I feel sad’ and then doing something that makes you feel a little better is how we can live in this world of stress and sadness.”

Using distraction doesn’t simply mean “fake it til you make it”, Dr. Isenberg-Grzeda says.

“That’s a phrase that’s often used in the grief world, and really, in our lives in general,” he said. “When we experience intense emotions, there’s a common phenomenon of stoicism or the idea of keeping a stiff upper lip. I want to educate people: feeling sad, particularly when someone you love has been lost, is part of the wide range of human emotions.”

If you are feeling sad, it may help to say so.

“I often hear in my office, ‘I’m sure people are sick of me being sad and talking about my sister who died last year so I hold it in’,” Dr. Isenberg-Grzeda says. “That’s just not usually true. A good, kind, well-meaning person wants to help. They may not know how, so try to tell them what you need. Most people, when they know what you need, prove to be quite helpful.”

So if you need to talk about your sister, or to cry because you are having a bad sad day, you could say to a friend or to your spouse, “I need to have a moment. Can you please just listen? I just need to know you are here.”

Also try to remember: Everyone is allowed to have a bad day. Actually, even two. So don’t be too hard on yourself if you are in pieces sometimes.

“There’s not a threshold of bad days to say, ‘This is now a problem and you aren’t coping as you should’,” Dr. Isenberg-Grzeda says. “We all experience emotions. When those emotions are so intense that it is stopping you from functioning, that’s when we need to explore things further.”

If you aren’t able to go to work, or you have quit all your hobbies, or you are arguing more than ever with your spouse and snapping at your kids, it could be time to get some help.

“Reach out to your family doctor or a grief counsellor,” Dr. Isenberg-Grzeda says.

If you are acutely upset and having thoughts of harming yourself, call 911.

If you’ve had a history of a psychiatric diagnosis, reach out to your care provider.

“For example, if you were diagnosed with depression a few years ago and are now experiencing sadness due to the death of a loved one, you may start to wonder if it is actually depression returning. Call your doctor.”

Resources:

Patient and Family Support at Odette Cancer Centre
Coping with Grief by Cancer.Net
Grief and Bereavement by Canadian Cancer Society
MyGrief.ca
Virtual Hospice
Grief is a process that can’t be rushed by Your Health Matters

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We are so thankful that so many family members came; it takes courage to step into the circle and grieve together, and we hope that it brings some peace and healing. We also send thanks to Rebecca Collett who shared her glorious voice with us, to the parents who so beautifully shared their stories and read poems, to Kelly for organizing everything so perfectly, and to Brenda our chaplain and Helen our wonderful music therapist who led such a meaningful and lovely program.

Brenda introduced a new and wonderful element to our event this year; she asked everyone to take a small painted stone, and then shared these instructions:

Keep me as your remembrance stone, to hold as a small comfort. When you’re ready to let me go, give me back to nature.

We then concluded with our butterfly ritual, in which every parent wrote a message on a butterfly and hung it on our tree. The wind tried to shake our butterflies loose but Meghan wasn’t letting any of them go! (And thank you Meghan for taking on butterfly duty!)

This next poem wasn’t included in today’s ceremony, and Stephen Spender was not writing about babies, but it does come to mind when thinking of these children and their wonderful families. The entire poem can be found here, but please read this small excerpt.

From I Think Continually of Those Who Were Truly Great …

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For families that have experienced such devastating loss, receiving more sensitive and personalized obstetrical care during their next pregnancy is essential, but it can be difficult to find.  A new pilot project at Sunnybrook is attempting to address this gap: the Subsequent Pregnancy Program.

“Our primary focus is on evidence-based, woman-centered care.  We are seeing women and their families who are experiencing another pregnancy after a late loss (past 16 weeks gestation) or the death of a baby within the first month of life,” says Megan Fockler, Advanced Practice Nurse. Together with Dr. Jon Barrett, Chief, Maternal-Fetal Medicine, she is leading the implementation of the Subsequent Pregnancy Program at Sunnybrook.

[pullquote align=”right”]“Linking women to a care team that knows about their history, and understands their story and preferences, will hopefully create a more positive experience for our families,” says Fockler.[/pullquote]

The one-year pilot project, which launched in the summer, has started seeing women who are expected to give birth in the fall and early 2015.  Within a family-centered model of care, women will receive care from an interprofessional team. The Advanced Practice Nurse will act as a navigator, connecting families with resources and providing seamless care and support when needed.

“Women are looking for excellent clinical care that includes sensitivity and continuity.  We focus on individualized care that begins during antenatal visits and extends through the birthing process and postpartum care. Linking women to a care team that knows about their history, and understands their story and preferences, will hopefully create a more positive experience for our families,” says Fockler.

After the initial pilot project phase is complete, the Women & Babies Program hopes to expand the Subsequent Pregnancy Program to take on more patients in early 2015.

The post Subsequent pregnancy program launches appeared first on Your Health Matters.

Preface:

I have been writing letters to my son Charlie for the past four years, since he passed away in the NICU at 24 days old. I let out my feelings, chronicle the days in the life of his surviving twin, Austin, and generally process the reality of living without him.

I have been to therapy, used antidepressants, volunteered, fallen apart completely, rebuilt my life, persevered, and carried on. Throughout all of this, the contacts I made at Sunnybrook have kept both me and my now 4 year old Aussie strong.

Carly with one of the beautiful angel gowns

When the opportunity came to donate my wedding gown to Forever Loved Angel Gowns, it was easy. The chance to give back to the NICU that gave my boys every possible advantage overwhelmed me. It’s a small gesture, giving something beautiful to be recreated into many more beautiful things, but it’s all that
I can offer at this point. Life blindsides you sometimes – it’s what you do the day after that really counts.

– – – – – – – – – – – – – – – – – – – – – – –

Dear Charlie,

Today is the day your twin brother went to kindergarten. He got bigger and smaller, all at once. I watched him walk in line, with his too big hoody and his huge, heavy backpack (feet barely showing beneath), into his new classroom when the bell rang. Today he left me behind without even a glance back. Today he
grew up and so did I. Today Austin went forward, yet I go back.

I went back directly to the place where it all started – and ended – four years ago almost to the day.  I delivered burial gowns for babies gone too soon, created from my wedding dress, to Sunnybrook’s NICU – the place where you and your brother Austin were born. One gown, so full of promise and hope and happiness, became 13 tiny gowns, full of sadness and confusion and death. The emblem of a beginning, recreated into the symbol of an ending.

An angel gown created from a wedding dress

And yet, there is a sense of comfort. There is the knowledge that something beautiful might be passed on. Though my wedding dress no longer represents a beginning, it can still bring peace. Love isn’t recycled but purposes can be. Closure comes in many forms; for me, it begins to come from the knowledge that although I didn’t have anything to hold you in during your last moments, there is another option for others facing their darkest hour. When the tubes and wires fall away, and the silence takes over, beauty creeps in. You were beautiful enough, Charlie. But in the days after, keepsakes become important.

So, today I let go. And in letting go of one symbol and one part of Austin’s life, I hope that it can bring comfort back to where it all began for us.
Today I come full circle.

My personal thanks to Sheila Babineau, one of the Angel Gown seamstresses, and to Wendy Moulsdale, NP- Pediatrics at Sunnybrook NICU who first introduced me to this worthwhile cause.

Wendy and Carly at the entrance to our NICU

– – – – – – – – – – – – – – – – – – – – – – –

Thank you so much, Carly, for writing this beautiful post for us. We thank you for sharing your wonderful words and your wedding gown. We would also like to let all families from our Women and Babies program know that this Sunday (September 14 at 1pm) we are holding a memorial event in our Butterfly Garden. We will be honouring all the babies gone too soon and their families. If you would like to join us, to grieve and to celebrate, you are most welcome.  Please email kate.robson(at)sunnybrook.ca for more information.

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