This summer, I (Rachel) had the privilege of co-authoring an article with doula and fellow bereaved mom Sarah Mcilwham for the Ottawa-based magazine From Belly to Baby. We shared some ideas about how to support friends and family members through pregnancy or infant loss. Rob and I are so blessed to have thoughtful friends who purchased a tree in memory of Aaron through the City of Ottawa Commemorative tree program. Aaron’s tree is planted in a park close to our home and we visit it often. Gabriel always waves at the tree when we drive past the park and it has become part of our routine to visit the tree. Sarah and I have included some ideas in the article below for ways that you can support a friend or family member who has or will experience pregnancy or infant loss.
Providing Support After Pregnancy or Infant Loss
Although the majority of pregnancies end with the birth of a healthy baby, it is estimated that one in four pregnancies ends in miscarriage (loss up to 20 weeks of pregnancy), and approximately 7 in every 1,000 pregnancies end in stillbirth (loss after 20 weeks of pregnancy). With this level of frequency, it is very likely that either you or someone close to you have experienced this traumatic event in their lives. Other families and individuals experience the devastating loss of a newborn or infant. These types of losses are shocking, and are rarely openly discussed in today’s society, which can leave those who want to support their family member, friend, colleague, etc. feeling a bit lost and unsure how they can best support their loved ones.
Simply being present for someone, to quietly witness their grief, can be so important for the person who has experienced the loss. They will encounter so many people who will feel the need to say something, anything in an effort to help the grieving parent to feel better. In many cases, it is most helpful to listen, witness and acknowledge their grief, and let them know that they have a safe place to express all their emotions and feelings. In the first couple of weeks and months, they may feel supported by their community, but it is also important to be there in the many months and years to follow.
The intensity of their grief will lessen in time, but the grief and love they feel for their child will never leave them. Walking with someone beside them in their grief can be a very valuable part of their healing journey. In addition to being there to witness someone in their grief, many people will want to provide support in a more practical and tangible way. Here are some practical ways to support someone who has experienced a pregnancy or infant loss, in the immediate time after their loss, and in the months and years to follow. These ideas will help the individual or family during their struggle to stay afloat when it feels like the waves of grief keep crashing down.
Bring a Bite to Eat. People often say “If you need anything, just ask.” Chances are that they will not ask. Bring over dinner, mow their lawn or clean their house. Do whatever it takes to make the daily grind more manageable. If you aren’t a cook, give a gift card to a restaurant like The Red Apron, which offers a home cooked meal with delivery in the Ottawa area. Quite often, people receive meals immediately after the loss but support is also needed after they return to the daily grind.
Say Their Name. The baby they lost is a person no matter how early the loss. Honour their baby. Some people just do not know how to act or what to say in these types of situations. Talking about the loss of their baby acknowledges the life that was gone to soon.
Remember the Milestones. Acknowledge tough days. Days like Mother’s Day/Father’s Day; diagnosis dates; due dates; the actual day the baby was born; their baby’s would-be birthday; all of these dates are hard. A small gesture of a card, phone call, or even a text, will go a long way to let them know that their baby is not forgotten and that you are thinking of them.
Send a Care Package. Hamilton-based Tenth Moon Mothercare has created a Mama’s Heart care package to help soothe the hearts of women who experience pregnancy or infant loss. A portion of proceeds from the sale of this package support the Pregnancy and Infant Loss (PAIL) network. Cornerstone Wesleyan Church in North Gower has a faith-based Hope Box program in Ottawa/Gatineau for individuals and families who have lost a baby through any type of pregnancy or infant loss. The purchase of this box includes a charitable receipt.
Give them Information on Support Groups. Talking with other parents who have experienced a similar type of loss can be an important part of healing for the family. There are many support groups for individuals or families experiencing pregnancy and infant loss in the Ottawa / Gatineau area. Roger Neilson House offers a Perinatal Loss Support Group for individuals and families who have lost a baby over 20 weeks gestation as well as a group for siblings and grandparents. The Ottawa chapter of Bereaved Families of Ontario offers a monthly Support and Share night for any pregnancy or infant loss (first Tuesday evening of every month). Empty Arms, Open Heart is a support group for any pregnancy and perinatal loss that meets monthly (second Thursday of each month). The Center for Family Intervention Studies and Research (CÉRIF) offers a free French support group meeting for parents who have experienced a perinatal loss and they also offer a pregnancy after loss group in French at the Université du Québec en Outaouais. There is an infertility support group the last Saturday of every month at the Ottawa Fertility Centre. MotherWit Doula Care Ottawa also offers a monthly (3rd Friday evening of each month) pregnancy and infant loss support group.
Make a Donation in memory of their baby to an organization that supports bereaved families and individuals. Roger Neilson House, Bereaved Families of Ottawa and the Pregnancy and Infant Loss Network all provide services for families and individuals who have experienced this type of loss.
Help plan a memorial to remember their baby. There are several things you can do including planting a commemorative tree or garden, organizing a birthday celebration at a park, etc. The City of Ottawa Commemorative Tree Program people who wish to have a tree planted in a City park in remembrance or to commemorate a loved one who has passed away.
Walk to remember their baby during Pregnancy and Infant Loss Awareness Month in October. On October 14th, 2017, Aaron’s Butterfly Run Ottawa/Gatineau will be taking place to support families and individuals who have experienced pregnancy and infant loss. The run is being coordinated by a small group of volunteers who have personally experienced the pain of pregnancy and infant loss. The 2017 run is being organized in honour of baby Aaron, a patient of the Perinatal Hospice at Roger Neilson House who spent 100 precious minutes with his family after birth. Butterfly Wings for children are for sale as a fundraiser for the run at The Three Sisters Bakeshop (2211 Arch Street). More information on the run can be found at www.butterflyrunottawa.ca.
The support of friends and family can help to alleviate some of the feelings of isolation that often accompany a pregnancy or infant loss. Of course, no matter how much you want to, you can’t take your friend’s pain away. This loss will stay with them forever. However, you can do the next best thing: you can be there for them while they navigate their journey through grief and can provide support when they need it most.
One of our goals for Aaron's Butterfly Run Ottawa/Gatineau is to raise awareness and share resources that touch on the topics of miscarriage, infant loss, and infertility. There is a relatively new documentary that does just that. It may be a controversial documentary, as the film dabbles into the realm of a social media experiment; but at the same time, the couples in the film are highly relatable to those who've experienced miscarriage, infant loss, and/or infertility. As a volunteer for Aaron's Butterfly Run Ottawa/Gatineau, and as someone who's experienced infertility for almost 3 years, a first-trimester miscarriage during the 1 and only time I was pregnant, and as someone who is about to undergo IVF, I found this film to be extremely relatable.
Here is how the producers of the film would describe it:
Some think an in-vitro fertilization (IVF) contest sounds crazy, but countless Americans desperate to start a family believe this social media experiment is their only hope. Oscar-nominated director Amanda Micheli’s provocative documentary follows several aspiring parents who desperately want to have a baby but are struggling with miscarriage, infant loss, infertility, and the high cost of infertility treatments. They place themselves in the hands of a Las Vegas doctor and his annual contest, which offers a prize of a free round of IVF — with no guarantee of success. Contestants post their video entries on YouTube, counting on the votes of strangers to make their dreams of parenthood come true.
Despite the fact that nearly 1 in 6 couples worldwide are unable to naturally conceive and carry a baby to term, for fear of judgment or heartache or both, infertility stories are largely kept secret. While exposing private pain online to win a contest is a brutal proposition, IVF is rarely covered by insurance in the U.S., so many infertile couples consider this a gamble worth taking. Through this controversial contest, VEGAS BABY navigates the complexities of America’s burgeoning fertility industry and unveils the class disparity within a topic that is often clouded by judgment and stereotypes. Micheli explores universal themes of desire and loss through her intimate portrait of the diverse individuals – from a devoutly Catholic Latino couple in Texas to a lesbian Lady Gaga Impersonator in New York – determined to have a baby against all odds.
This weekend, it was five years since Rob and I (Rachel) were married on an exceedingly hot August day. A dear friend from university gave the following reading at our wedding:
Blessing of the Hands
These are the hands of your best friend, young and strong and full of love for you, that are holding yours on your wedding day, as you promise to love each other today, tomorrow, and forever.
These are the hands that will work alongside yours, as together you build your future.
These are the hands that will passionately love you and cherish you through the years, and with the slightest touch, will comfort you like no other.
These are the hands that will hold you when fear or grief fills your mind.
These are the hands that will countless times wipe the tears from your eyes; tears of sorrow, and tears of joy.
These are the hands that will tenderly hold your children.
These are the hands that will help you to hold your family as one.
These are the hands that will give you strength when you need it.
And lastly, these are the hands that even when wrinkled and aged, will still be reaching for yours, still giving you the same unspoken tenderness with just a touch.
Little did I know how true these words would be when we chose this reading for our wedding. The last five years have been full of both happiness and sorrow; of joy and of pain. We first experienced pregnancy loss in 2013 in the silence of a missing heartbeat at our ten week ultrasound. We held hands in that dark room as the doctor told us that our baby had no heartbeat. We experienced the sheer joy that came with the birth of our son Gabriel in 2014. We held him and rocked him; this little miracle whose hands we now hold tightly as we guide him through life. Our hands held our newborn son Aaron as he entered and left this world so quickly. These hands have wiped away many tears of disappointment, sorrow and joy in the past five years.
The hands of our friends and families have also been integral to keeping our marriage together over the past five years. The hands of these people have prepared many meals for us, written or typed notes of encouragement and have lifted us up in prayer. The hands of these family members and friends have helped us organize Aaron’s Butterfly Run, sewn butterfly wings and have lifted up when we couldn’t stand.
As we celebrate our anniversary, we are so thankful for the past eight years together. They have been hard and amazing years and we are so blessed to have each other. I won't sugarcoat the truth. These past five years have been the most challenging years of my life. Loss has dramatically changed both Rob and I. Parenting a toddler is more difficult than I had ever imagined, but is so rewarding. The help from our friends, families and counselling services from Roger Neilson House have helped get me back on my feet through this grief journey.
Matt from Green Tea Photography did an amazing job with our our wedding day photos and we wanted five year anniversary photos in the same spot. Ariane DL Photographe generously donated a photography package to the Silent Auction which we won. She beautifully captured our family including an ultrasound photo of Aaron and a butterfly in memory of our first pregnancy lost at 10 weeks. It was important to me to incorporate all of the members of our family in the photos.
The Pregnancy and Infant Loss (PAIL) network has announced that it's moving from its Facebook page to a Facebook group! This new change will allow PAIL to foster an interactive and inclusive online space where members will be able to engage more directly with PAIL Network and members of our community.
When PAIL surveyed its members back in 2016, members said that they wanted more opportunities to connect with other families online. Moving from a Facebook page to a group is a step in this direction, as it will allow members to more easily communicate with each other, and with PAIL.
This change means that, effective August 7, 2017, the current PAIL Network Facebook page will become inactive. If you would like to continue receiving updates from PAIL Network, and contributing to the PAIL Facebook community, please request to join the new Facebook group.
Please help us spread the word by sharing this information, and inviting friends and family who have been affected by pregnancy and infant loss to join the new group. See you there!
After Aaron’s birth and death, I (Rachel, Aaron's mom) began re-reading the Anne of Green Gables series by beloved Canadian author L.M. Montgomery. I had completely forgotten that in Anne’s House of Dreams, Anne loses her first baby Joyce on the day that she is born. The scene is so poignant and heart wrenching to those of us who have experienced the loss of a pregnancy, infant or child. L.M. Montgomery knew all too well the pain of losing a child at birth. Her second born son, Hugh Alexander MacDonald was born still on August 13, 1914.
An excerpt from Anne’s House of Dreams:
Though it is 100 years since L.M. Montgomery penned these words in 1917, they still ring true in my heart. Marilla was right – it won’t always hurt so much. However, we live in a world where there is both joy and sorrow. I have learned so much about life in the past year.
Sometimes, grief comes crashing down like the waves of the ocean. However, in the last year I have learned that I will not drown. As much as the salty tears flow down my face, I wipe them away and I will continue to rise above the waves. It's hard, but life is still beautiful.
The 12 Week Taboo, or how we unconsciously tell people to keep quiet about their miscarriages...
Written by Margaret Sambol, one of the volunteers for Aaron's Butterfly Run Ottawa/Gatinea, who lost her son Matthew at 26 weeks and lost another pregnancy with a first-trimester miscarriage (read her previous blog posts here and here)
I don’t recall when I first heard the “rule” that you shouldn’t tell people you are pregnant until you are 12 weeks along. I don’t recall who told it to me, but I received it as a helpful piece of advice. The unspoken reason behind that taboo of secrecy is because the risk of miscarriage is highest in the first trimester. If you tell everyone you’re pregnant, you’ll have to tell everyone when you have a miscarriage. And it didn’t occur to me until years later the unintended isolation this rule causes.
I diligently followed this rule during my first pregnancy, which ended in a stillbirth at 26 weeks, and because I had told everyone I was pregnant, I had a several uncomfortable conversations with professional associates in the year that followed, asking me how the baby was doing and why I was back at work so soon. So, I thought, “Yeah, maybe that’s not a bad rule.” I worked in a very public job where I had a roster of hundreds of contacts and it would be hard to tell all those people about another loss.
I followed this rule during my next two healthy pregnancies, making up excuses for being so tired during that first trimester of silence, or why I didn’t feel like having a drink when heading out with friends. Luckily, I didn’t suffer from morning sickness but I certainly feel for the women who are trying to hide their pregnancies while sneaking away from their desks to vomit discreetly. I was happy to be pregnant so keeping it a secret was a battle of near constantly biting my tongue to keep my good news from spilling out.
My next pregnancy ended in a miscarriage. When I started bleeding, I went to see my family doctor and totally forgot to cancel my lunch date with my aunt. I felt bad for standing her up, but I also hating having to tell her the good news/bad news at the same time. “Hey, I was pregnant, but I’m not anymore.”
Because I hadn’t told anyone about my pregnancy yet, my husband and my doctor were the only ones to know about the miscarriage. I ended up telling a few people, my mom, my sister, but mostly I kept that loss to myself.
When I got pregnant again a few months later, I spent a fair bit of time thinking about that first trimester of silence. For whom was this rule created? Who does it benefit? It certainly doesn’t benefit the woman who feels alone in her loss. It doesn’t help people find resources, or talk about what is happening to their body. This silence about early pregnancy implies that we are supposed to keep our losses to ourselves, and hide our tears and grief, the same way we hid the exhaustion and the nausea. Are we so uncomfortable with grief that we think it is better to pretend it doesn’t exist at all?
So for my fifth pregnancy, I did tell people. We were visiting friends and family at Christmas time, and we made the announcement in person to much congratulations and hugs from the people who matter the most to me, although I chose not to put it on Facebook.
I did get the question, “how far along are you?” and heard that bit of surprise when I said just nine weeks. With other women, I have certainly seen that arched eyebrow, that whispered judgement that says, “Isn’t she telling everyone too soon?”
A week later, on New Year’s Eve I began to bleed and I just knew it was the start of another miscarriage. Once I confirmed it with my doctor in the following days, I did have to tell all those people about the miscarriage and it was hard. But it was also nice to not feel alone. It was comforting to receive sympathy and care, and a fair bit better than the isolation of the previous miscarriage. The people who love me want to know what is going on in my life, which means both celebrating the good news and comforting in the bad. I don’t have to worry about “burdening” my loved ones with the news of my miscarriages. There is no embarrassment in vulnerability, and a tremendous amount of support when you are willing to open up and admit you need it.
The other thing I found surprising about all this talk of loss, is how often my story is reciprocated by someone else’s story. How often I have felt that discussing our losses is a relief and a bond. So I tell my children about my miscarriages and the miscarriages of my friends. I tell them why I am making this casserole for this friend or why we are shopping for flowers for that friend. They are young, but they understand the idea that not all pregnancies end in a healthy baby, they understand that it is common and they understand that there is support. And as they say, forewarned is forearmed, and the best idea I have to make the sad journey of miscarriage less lonely.
Rachel and Rob Samulack, along with their son Gabriel, were absolutely thrilled to accept a $500 donation to Aaron's Butterfly Run Ottawa/Gatineau from TD Canada Trust!
Alison Nobbs, the bank manager at the Ottawa Kilborn branch (now relocated to Billings Bridge), presented the cheque to Rachel and Rob. Coincidentally, Anne Jones, a registered nurse from Roger Neilson House also happened to be at the bank and agreed to take a photo as well!
Thank you to TD Canada Trust for supporting parents facing pregnancy or infant loss and also for supporting the Children's Hospital of Eastern Ontario (CHEO)!
You might recall one of our posts before Father's Day, where we spoke about Kelly Farley, who is a published author of Grieving Dads: to the Brink and Back.
Kelly will be joining the Love & Loss Project on Sunday July 25 at 8 PM to talk more about the male experience of grief and the 2 years that he spent interviewing other men about their experiences of miscarriage, pregnancy and child loss.
So mark this on your calendars because you are all invited to join in the discussion with the Love & Loss Project and Grieving Dads on Sunday July 25th at 8 PM here.
Today marks one year since Rachel and Rob Samulack's son Aaron was born and passed away.
Today, Rachel shares with us a letter she wrote to Aaron that she left with him during his internment and a follow-up letter she wrote to him this year in honour of his birthday on June 19, 2017.
Thank you Rachel for sharing such personal and heartfelt messages, and for everything you do to raise awareness about perinatal loss and support others who are experiencing something similar.
Rachel and Rob Samulack chose to coordinate Aaron's Butterfly Run Ottawa/Gatineau in honour of baby Aaron and in support of all other individuals and families who've experienced loss of a pregnancy, loss of an infant, or infertility. The Run will happen on Saturday October 14, 2017 during pregnancy and infant loss awareness month.
Rachel and Rob Samulack discussed organizing a walk in Ottawa for pregnancy and infant loss awareness after the loss of their son Aaron 100 minutes after birth on June 19, 2016 and the loss of their first pregnancy at 10 weeks in 2013.
Rachel says "the goal was to have it be a community walk in Old Ottawa South from Sunnyside Wesleyan Church. We would walk with our friends and family members in October 2017 for Pregnancy and Infant Loss Awareness month. We asked a couple of friends who had also experienced this type of loss if they would be interested in organizing this type of event, they answered with a resounding yes. Our plan was to have a low key event... we would just tell people what time to show up and Rob and I would provide a couple of pizzas. We would walk to celebrate the lives of all of our children, those who are with us on earth and those who are with us in spirit. It was supposed to be something easy to organize."
Fast forward to October 2016. Rachel found out about The Butterfly Run Quinte while sharing Aaron’s story on the Pregnancy and Infant Loss (PAIL) Network website. The run was organized to raise awareness about pregnancy and infant loss by bereaved moms Loralee, Beth and Barb in Belleville, Ontario. They received such an outpouring of support from their community. They raised over $75,000 for pregnancy and infant loss programs and resources in Quinte in their inaugural year of the run in 2016. And in 2017, Quinte hosted their second run and Peterborough, Ontario hosted their first! After hearing about the other Butterfly Runs, Aaron’s Butterfly Run Ottawa/Gatineau was created in January 2017. This year, the Butterfly Run Quinte raised over $100,000 for pregnancy and infant loss resources in Quinte and Rachel was able to participate in the run. It was quite the event to behold. It was so well organized and amazing to see the community rallying behind such an amazing cause.
The organizing committee for Aaron's Butterfly Run decided to raise funds in 2017 for Roger Neilson House and we have been asked several times why we chose to have the funds go there. While there are other fundraising events for Roger Neilson House, the Perinatal Hospice and Perinatal Loss Support Group are one of only a handful of Perinatal Hospice and Perinatal Loss Support Groups in Canada. The Perinatal Hospice and the Perinatal Loss Support Group are services that have been offered since 2007 at Roger Neilson House at no cost for parents in Ottawa/Gatineau.
Perinatal hospice (or perinatal palliative care) supports individuals and families who receive a life-limiting or life-ending diagnosis while pregnant by helping them plan for the baby’s birth, making preliminary medical decisions about care for the baby after delivery, providing emotional support for the individual/family, and assisting with memory-making such as photography. Palliative care follows the baby’s lead and can also include medical treatments to improve the baby’s life during pregnancy and after birth.
The Perinatal hospice program first took place at Roger Neilson House in 2007 when a baby girl, known by her parents to have a chromosomal abnormality, was born with a life-limiting diagnosis and an expectation of death in early infancy. This family, referred to the palliative care team at Roger Neilson House, was cared for over months, in hospital, hospice and at home. She died in her parents arms on Christmas Eve. Her parents who had struggled in isolation during their pregnancy after receiving the devastating news could only say “we wish we had known about your program earlier”. 55 families have been referred through the Perinatal Hospice program since 2007. As one of the families who have benefited immensely from this program, Rob and Rachel wanted to find a way to say thank you to the team at Roger Neilson House for their ongoing support. Aaron’s Butterfly Run Ottawa/Gatineau is a labour of love.
The Perinatal Loss Parent Bereavement Support Group is available to parents who have lost an infant to a stillbirth (over 20 weeks gestation), neonatal death up to the first 28 days of life, or medical termination or induction where a palliative diagnosis/pregnancy existed for the infant/mother. The group is facilitated by two Registered Social Work staff and takes place over eight weeks. The Perinatal Hospice and Perinatal Loss Bereavement Support groups have been offered without any additional budgetary support. The palliative care team provides care activities over many weeks and months and is available around the clock, 7 days a week, awaiting the birth of their precious patients and the professional work that is offered graciously often in the middle of the night to new parents, siblings and families. Roger Neilson House also holds events throughout the year to support parents - they offer yoga classes once a month and drop-in coffee sessions. The support that is offered by this team is truly amazing and we are so blessed to have a program like this in our community, available for families/individuals who need it.
Rachel comments: "I’ll be honest. I would much rather be planning a first birthday party for Aaron than be organizing Aaron’s Butterfly Run. There are days where it is so hard to share our story. It’s still so fresh. There are still some days when I hide in the washroom and cry. Rob and I couldn’t have made it through the last year and a half without our amazing network of friends, family members and the team at Roger Neilson House. Our network has kept us fed, loved and supported both physically and emotionally. The run would not be happening without our amazing organizing committee. They have spent hours organizing the Film Night, Silent Auction, Paint Nite, and meeting to discuss logistics for the actual run. A big thank you to all of our supporters as Aaron’s Butterfly Run raises awareness for pregnancy and infant loss resources and programs in Ottawa/Gatineau."
"Being a bereaved parent is not easy. It’s isolating and people are uncomfortable talking about it. Both sets of my grandparents lost children, one at ten days old and the other one as a toddler. One of my grandmothers also experienced multiple pregnancy losses and one of my aunts experienced a stillbirth. When they experienced their losses, there were no resources available to them and it’s something that was swept under the carpet. All of the members of our organizing committee have been affected by pregnancy and infant loss is some way. Unfortunately, pregnancy and infant loss happens. Aaron’s Butterfly Run is more than a fundraiser for Roger Neilson House. It’s a space for bereaved parents to find the resources and community that they so desperately need in the days and years that follow their loss(es). We are so blessed to have access to a place like Roger Neilson House and Rob and I are truly honored to be able to share Aaron’s story with anyone who is willing to listen. We can only hope that we have provided support and resources to others who will need it in the future."
As Aaron’s birthday approaches, Rob and Rachel have created "Team Aaron" as part of Aaron's Butterfly Run Ottawa/Gatineau to raise funds for the Perinatal Hospice and Perinatal Loss Support Group at Roger Neilson House. You could support Team Aaron here: https://osf.akaraisin.com/pledge/Participant/Home.aspx?seid=14130&mid=9&pid=3366988
Please consider registering for the run on Saturday, October 14th 2017 or donating in memory of a butterfly baby: www.butterflyrunottawa.ca/sign-up
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