Roger Neilson House is seeking feedback from members of the community on their experience with pregnancy following a perinatal loss. Their aim is to gather data that they will use to inform support services specifically developed to serve this population of parents.
Who can participate?
Participation is voluntary. Any parent can participate who is considering pregnancy, currently pregnant, or has been pregnant following the loss of a child and has completed a bereavement group at Roger Neilson House.
What is involved in participating?
You will be contacted via phone to answer questions regarding your loss and current status on your journey to have more children, which should take roughly 10-15 min. Following this phone questionnaire, you will be assigned to a focus group with other parents who are at similar points in their parenting journey.
If you are interested in participating in this research study, please contact:
613-523-6300 ext. 622
NILMDTS in Ottawa is looking for more volunteer photographers as they are currently very short on volunteers. Last week, February 21st 2018, marked nine babies photographed in eleven days by Ottawa NILMDTS photographers. If you are interested in becoming a volunteer photographer, please join the NILMDTS Prospective Photographers Facebook Group. They will also be holding an in-person information session in Ottawa on Saturday, March 3 2018 at 12:00pm.
Liz Bradley, another volunteer photographer with NILMDTS shared the following post on Facebook on February 17:
If you are a local photographer, please consider joining the Facebook group and/or attending the in-person information session to learn more.
Do you ever wonder what to say to someone suffering a miscarriage, experiencing infertility, or losing a child?
Sometimes it is difficult to know what to say, or what to do, even if you've experienced similar losses of your own.
Katelyn Wooley at The Noble Paperie created greeting cards intended not only for the happy moments in life, but also cards for the struggles we battle through. The Noble Paperie's mission is to spread joy and hope to those with a mama's heart: who are struggling through miscarriage, infertility, and other pregnancy-related issues. They believe that becoming a mother starts when you prepare your heart to have children - not the actual manifestation of a child. A portion of their sales are donated to Miracle Babies.
Check out their greeting cards at The Noble Paperie.
It’s sad but it’s true, and a hard lesson to learn for those who experience it. A positive pregnancy test does not always end with a happy, healthy baby 9 months later. In fact, 1 in 4 pregnancies in Canada end in miscarriage and 1 in 6 Canadian couples experience infertility.
So this brings us to present day...
This current miscarriage might sting a little more than our last one because it follows an initially successful IVF treatment. Going through 3 years of infertility, with only 2 pregnancies and 2 missed miscarriages, is not an easy road. Being pregnant or experiencing a miscarriage for 80% of 2017 is not fun, especially when you have no baby to show for it. Life isn’t always fair and not every infertility road has a happy ending - at least that's how we're feeling at the moment. IVF is not always a miracle solution as miscarriages are just as likely as they are with a natural pregnancy. This is the unfortunate reality that I’m trying to accept right now.
No matter how hard we work, we cannot control our life when it comes to fertility. This has been a hard lesson to learn, since my husband and I have been people who have been told and who’ve learned that when you work hard, and if you work hard enough and for long enough, you can achieve your dreams. Unfortunately it seems that this is rarely this case with infertility and recurrent miscarriages. Or maybe we are just jaded and in a negative space at the moment... But these are our current sentiments. Unfortunately, words of hope and prayers get wasted on us at the moment - we feel we are more resilient and prepared when we are realistic and prepared for the worst. All we need is for people to say “that really sucks”. At this point in our lives, words of encouragement or hopefulness are more hurtful than they are helpful because we feel that we can not realistically live up to those hopes and prayers. Sometimes I miss our past happy-go lucky, everything is sunshine and butterflies, younger selves...
Other than the physical challenges of pregnancy and missed miscarriages, the emotional rollercoaster can be rough. Due dates like October 22nd and June 16th will always be difficult for us. Pregnancy announcements, baby showers, and even socializing with our peer group often surrounded by their babies is very difficult. We often feel left alone or left behind to fend for ourselves. And thinking about trying again is not as easy as it might initially seem. This will likely involve more testing from our fertility clinic in hopes to ensure I don’t have scar tissue or complications from the procedures I’ve needed to treat our missed miscarriages, genetic testing to see if these two back-to-back miscarriages are just bad luck or if there is another problem going on, a frozen embryo transfer (or a final 3rd transfer - we only had 3 embryos from IVF), and the stress and anxiety of it working or not working - all of these processes and scenarios are equally stressful for different reasons and this process can take months.
Although this miscarriage this time might have stung a little more because it was after IVF, at the same time, it was a tiny bit easier because I was empowered. I knew what resources existed in my community to help me get through this and I knew what to expect. I was not alone and I had knowledge. Knowledge really is power. This was the exact opposite experience I had with our 1st miscarriage. At that time, I felt like I was in the dark and our medical professionals didn’t provide us with any information to support us.
I have been volunteering for the Butterfly Run Ottawa/Gatineau this year. In case you don't personally know me, I’ve been the one behind the computer - taking care of most of our website and social media. And if you attended the Run, you probably met me at our Run Registration during race kit picks ups or on the day of the Run at our registration booth! I can truly thank the Butterfly Run Ottawa/Gatineau for arming me with this power of knowledge, this sense of pride, and this feeling of community. Without the Butterfly Run, I would not feel as strong as I do under these circumstances. It is for this reason that I’m choosing to share our story. I hope that by sharing our story, another person might feel less alone in their journey.
Because of the positive experiences Ive gained through the Butterfly Run, here are some scenarios you might consider if you're going through something similar to me. These are just suggestions, based on what I feel has helped me quite a bit this year:
My hope is that no other people feel alone, afraid, or in the dark when they miscarry or find out that a miscarriage is imminent.
Also, I wanted to caveat this post, or end this post rather, with saying Im sorry if I share my feelings bluntly or if they are not the most positive thoughts at the moment... I don't mean to share these negative sentiments to offer the cruel realities of infertility and miscarriage (perhaps the first half of my post was a little dark and dreary). If you are going through this, or something like this, and feeling hopeful or positive, I do not want to take that away from you. Please continue to feel anything you are feeling! Every journey is different, and our feelings can change throughout this journey. Unfortunately, my personal feelings are not as positive at the moment, but I still feel they are important to share. By sharing these feelings, I do not want to take away your hope, but if by chance you are also feeling something similar to me, I would like you to know that there is someone who you can relate to.
If you're interested in reading more about our journey, here are some other stories/snipits I've shared during our journey (writing and sharing has also been helpful for me):
XO Thanks for listening! And hugs to you if you’ve been through or are currently experiencing infertility and/or miscarriage. It’s not an easy road but hopefully we can make it a smoother and clearer road together.
Thank you so much to everyone who volunteered and participated in Aaron's Butterfly Run on October 14 2017. With your support and donations, we raised over $30,000 for pregnancy and infant loss programs at Roger Neilson House. There were over 400 participants at the event! We are so grateful to our sponsors, volunteers, volunteer photographers, speakers and partners for making this event possible. It truly was an amazing community event. Rob and I could not have pulled this off without the support of our amazing organizing committee. Photos from the day will be coming soon. I (Rachel) was so overwhelmed by everyone who came to the event and remembered their butterfly babies. Thank you from the bottom of our hearts for all of your support.
At Aaron's Butterfly Run, one of our goals is to highlight and share local pregnancy and infant loss resources. You may have noticed our resources tab which includes information on a variety of support groups and infertility, pregnancy and infant loss resources in Ottawa/Gatineau. We are always adding to the list, so please email us if you come across any resources that you have found useful during your grief journey.
While Rob and I were pregnant with Aaron, we were contacted by a lovely woman named Deanna. A dear friend from church had requested a Hope Box for our family after Aaron's diagnosis. Deanna coordinates The Hope Box program in Ottawa and the surrounding area. Hope Boxes are a faith based resource filled with items and healing tools intended to support those who are grieving after losing a pregnancy or after the loss of an infant. They are made available for free to anyone who may benefit from receiving one (any age or stage of life). There are also Hope Boxes that can be tailored for subsequent pregnancy after loss. The Hope Box program started in the United States through an organization called Hope Mommies and the first Hope Box program in Ontario was started at Riverside Community Church in Swastika, Ontario. The Hope Box is now in Cobden, Kingston, Ottawa, Oxford-Brant and Swastika.
I (Rachel) was privileged to share Aaron's story at a Hope Box fundraiser this spring. The Hope Box program in Ottawa and area is holding a Ladies Hope Box info night on September 22 at 7:00pm at 35 Rob Way in Kemptville, Ontario. You can RSVP to this event at email@example.com
You can learn more about the Hope Box program on their website. You can also request to join their closed Facebook group to find out more information about this great resource. They will also be attending Aaron's Butterfly Run with a Hope Box, so be sure to check them out!
Yesterday, Aaron's Butterfly Run Ottawa/Gatineau was featured on Daytime Ottawa Rogers TV. Rachel Samulack (Aaron's mom and lead coordinator of Aaron's Butterfly Run) and Amanda DeGrace (one of our volunteers) spoke to Dylan Black about pregnancy and infant loss.
Rachel and Amanda highlighted some of the resources that are available to individuals and families in our community who experience such losses. For example, thanks to Mom Friends and Just Change Ottawa, our region will now have Butterfly Boxes - boxes filled with information and resources for those who experience miscarriage or infant loss. The Butterfly Box will be officially launched this evening from 7-9 PM at the Heart & Crown in the market. We would love it if you could join us to celebrate and learn more about the Butterfly Box.
They also highlighted the upcoming run on Saturday October 14th. You can register here.
You can view the full interview segment below.
Thank you Dylan Black, Daytime Ottawa and Rogers TV for your support!
If you think you can volunteer, please e-mail us at firstname.lastname@example.org or feel free to send us a message via our social media accounts!
Thank you so much!!!
The Butterfly Boxes of Ottawa/Gatineau will:
Our goals are to:
But we still need your help!
We would love the help of community to spread the word about these boxes so that families who are experiencing a loss will be able to access them. Thanks for telling others!
We are also looking for help from some key stakeholders to see this project through:
Please e-mail Mom Friends and let them know how you can help!
In addition to day-to-day operations, Mom Friends is working hard to launch the Butterfly Box Ottawa/Gatineau sometime this fall. We’ll keep you posted on a formal launch date, and provide more details about the Boxes as they come together.
Thank you SO much to our partners at Mom Friends and JustChange for making this happen!
And lets celebrate!
Please join us for #JustDrinks on September 19th at the Heart & Crown in the Byward Market from 7-9 PM to celebrate this $1,000 grant! Here is a link to the Facebook event.
I (Rachel) read a great article this week in Still Standing Magazine on body image and self-love after pregnancy loss. It’s (another) topic that is rarely discussed after loss, but it is something that some women struggle with. The first few weeks and months after Aaron’s death were difficult because I was emotionally and physically recovering. The physical reminders of what should have been were there every day. My milk came in the day of his memorial service. This was a painful reminder that my body was ready to nourish the life that it had carried for eight months. Two weeks after Aaron’s birth, a baby cried at the grocery store and my milk came down. I struggled into clothes that were too small because I couldn’t stand wearing my maternity clothes. At three weeks post-partum, I had someone look at my (empty) belly and ask when our baby was due. A few weeks later at a wedding, we were asked when we were going to have another baby by someone who didn’t know our story. I stood there with empty arms, my heart crushed by grief and my eyes overflowing with tears. I mumbled something and quickly ran away.
Our bodies are amazing – they can carry life, and sometimes life thrives against all odds. Over a year later, sometimes it is hard to remember what being pregnant felt like. Other times, I find that Aaron’s loss is still so fresh. While I was pregnant with Aaron, I received a care kit from a charity called String of Pearls which is based in the United States. String of Pearls was created to provide a nurturing and safe place for families as they navigate the path following a fatal prenatal diagnosis that will result in the death of their baby prior to, or shortly after birth. The keepsake box that they sent was lovingly packed with materials to make handprints and footprints, a beautiful storybook and memory making suggestions. It also included book called “A Gift of Time: Continuting Your Pregnancy When Your Baby's Life is Expected to Be Brief” by Amy Kuebelbeck and Deborah L. Davis that discusses perinatal palliative care. The kit also included (among other items) a cream with cabbage leaves in it to help ease the physical discomfort associated with milk coming in after birth. In Ottawa, Mom Friends have created a post-partum care package for new moms that would also be helpful for the physical recovery of childbirth for moms who have experienced a late term pregnancy loss.
It’s hard living with the grief of pregnancy and infant loss. I still find living in my post-partum body difficult. From the outside, you likely wouldn't guess that I have body image issues. It doesn't help that as a society, it is expected that women will have flat tummies immediately after giving birth and no stretch marks. I have been trying to be kind to myself, but it doesn't always happen. Three pregnancies in three years has changed me both physically and emotionally. The scars are there both inside and outside. I have been going to counselling which has helped immensely. I have one beautiful living child and for that I am so grateful. However, I still wish that my other two butterfly babies could be here with us. Until that time, “I'll find you in the morning sun, and when the night is new, I'll be looking at the moon, but I'll be seeing you.” Sammy Fain