As you you know, the 2nd annual Butterfly Run Ottawa/Gatineau is scheduled for Saturday October 13, 2018. In keeping with last year's tradition, we've chosen to honour new families for this year's Run. As you most likely remember, last year's Run was Aaron's Butterfly Run, in honour of Rachel and Rob Samulack's son Aaron who passed away 100 minutes after birth. This year, we will be honouring babies Charlotte and Théo, along with their families, and of course, all other butterfly babies who were lost too soon. So please join us on Saturday October 13, 2018, for Charlotte and Théo's Butterfly Run / La course Papillon de Théo et Charlotte.
Charlotte's mother Anne-Marie Warren and Théo's mother Claire Pagé will be the Co-Chairs on our Executive Committee for the 2018 Run. Both Anne-Marie and Claire have chosen to share their stories about their beautiful babies gone too soon, in hopes of raising awareness around perinatal loss and supporting other families in our community.
Thank you Anne-Marie and Claire, for sharing your babies with us, and for helping us remember all butterfly babies who were gone too soon.
Special thanks to our graphic design partners:
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.
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.
One of our goals for Aaron's Butterfly Run Ottawa/Gatineau is to break the stigma around talking about miscarriage and infant loss. As part of our vision, we wanted to encourage a dialogue and raise awareness about perinatal loss.
With that vision in mind, Margaret Sambol, one of the volunteers for Aaron's Butterfly Run, decided to share her personal loss story about the loss of her son Matthew. This is a letter she wrote to Matthew:
Dear Matthew David Sambol,
I first thought of you when I fell in love with your father in the year 2000, but it wasn’t until January 2009 that we began trying for a baby. When I had the first positive pregnancy test, we were so nervous and excited and we began to imagine what you might be like. Just a week later, I began to bleed and I felt certain I was having a miscarriage. Our family doctor booked an ultrasound to be sure.
The technician asked me if I had wanted to be pregnant.
“Yes, I was really excited about it,” I responded.
“Well, good, because there’s still a heartbeat,” she said.
I could see your little heart flickering on the screen and I was so relieved and shocked.
Despite this early scare, the pregnancy seemed to be going well. I was feeling healthy and fit and never had any morning sickness.
On May 22, we had our morphology ultrasound and we were delighted to see your hands and feet and spine and the flicker of your heartbeat. However, the technician said he was having trouble seeing some of your organs because you were small. Another technician was called in, but she couldn’t see either. They said we would have to come back for another ultrasound next week and we didn’t get the photo of you that we requested. We were worried, but told ourselves that it was okay that you were small. Some babies are just small, we said.
Later that night, our doctor called and he told us that variations in sizes of babies happen after 35 weeks and that it is very unusual for a baby to be small at this point. He said that it could mean that you had a chromosomal disorder. Joe and I came up with a little chant – grow baby, grow baby, grow – and we would sing that to you and rub my tummy and hope that you were getting bigger.
We had a follow-up ultrasound at the high-risk clinic at the Civic Hospital the next week. When we went in the technician still had a hard time seeing all the organs she needed to because of your small size. The high-risk specialist recommended that amniocentesis to determine if you did have a chromosomal disorder. I asked about treatment options and was told the only option would be an abortion. We told the doctor we didn’t want to risk losing you with an amnio if the information was not helpful for treatment and we didn’t want an abortion.
We had genetic counselling at the Children’s Hospital of Eastern Ontario the following week. She told us that the doctors who had looked at our file thought the issue might be something with my placenta not feeding you properly, rather than something with your chromosomes. After leaving CHEO, we felt a little better because we at least felt that the situation had been explained to us somewhat, but there were still a lot of tears flowing that night.
At our next ultrasound the following week, there was no amniotic fluid and I was put on immediate blood rest. We were also transferred to the high-risk clinic at the General Hospital. When we went home, I just tried to lie on my side as much as I could to improve the blood flow to you.
At our next ultrasound at the General, they confirmed that you still had no amniotic fluid. And the technician spent a lot of time looking at blood flow within you and through the umbilical cord. The next day, we met with maternal-fetal specialist, who explained a lot of things and offered us a lot of compassion. She explained that they were seeing a lot of resistance in my umbilical artery. Normally blood flows constantly through the artery even between beats of my heart. There’s a peak and then it slowly drops off, but it never reaches the zero line, it just settles in parallel to it. With me, they were seeing blood flow during the heartbeat to a peak, but it was quickly dropping off to zero. This means that the artery is constricted so blood can only flow through when it is under pressure. It also meant that you were not getting nearly enough blood and nutrients. Your body was compensating by re-directing blood to your brain, which is critical for development. Since my placenta was providing some removal of toxins, one of the places you were redirecting blood from was your kidney. This meant that you could not produce urine and it turns out that amniotic fluid is mostly made from baby’s urine. Without amniotic fluid your lungs could not develop properly and you were also vulnerable to bumps and shocks to my body. You also did not have the reserves needed to survive birth and you were too small for the life support equipment.
The doctor explained that if our baby was a normal size at 24 weeks they would take you out of me right away in a C-section. Since you were so small there was nothing they could do to save your life outside of me.
In that meeting we also talked about what it would be like to give birth to a stillborn baby and that waiting until you died within might be the best option for us right now, because there was nothing that could be done to save your life. The doctor and the nurse explained that I would be induced by putting a pill next to my cervix to soften it. It would still be labour and it would hurt but they would do whatever they could to reduce the pain. I would be allowed to hold you as long as I wanted and they encouraged me to name you.
I wasn’t feeling any fetal movement, so I wouldn’t know if it stopped. We decided to continue with regular ultrasounds to know when you died.
As our appointment approached on Thursday, June 25, I grew more nervous. That morning I just had this sick feeling in my stomach. I kept telling Joe how worried I was that they wouldn’t see a heartbeat.
When we got into the ultrasound room, my fears were confirmed. I couldn’t see your heartbeat and the technician stopped about 30 seconds in to go get a doctor. She came back with a doctor who looked at the ultrasound for about 10 seconds before saying, “I’m afraid we’re not seeing a heartbeat today.”
I knew it was coming and all the same it tore my heart out to hear that. I started to bawl and I grabbed on to Joe. I was vaguely aware that the technician had cleaned the jelly off my tummy. I was crying so hard, I started to hyperventilate and the doctor had to me sit up.
You were one day shy of 26 weeks gestation, which turned out to be good because they wouldn’t have let us have your body to bury if you had been born before 24 weeks.
They gave us a few minutes alone to cry together and then we were moved to another room to talk to the nurse about what to expect next. We decided that we wanted to be induced right away, but the nurse told us that the labour and delivery department was completely full. We were put on the induction list and told to go home and wait for a call. They called us on Saturday morning (June 27) at 10 a.m. to get to the hospital. We were surprised by how big the room they gave us at the hospital was: the nurses called it the presidential suite.
Throughout the day, they gave me doses of a pill to open my cervix which caused increasingly bad cramps. By midnight, the contractions were too intense for me to sleep. We walked around and I had a hot tub to help with the pain. At 7 a.m. I asked for something to help with the pain and they gave me a dose of a painkiller that made me feel loopy and out of it, but I could still feel the contractions, which were now about a minute apart. I asked for an epidural at 9:30 a.m., but the doctor came in and told me I was ready to deliver so I never got it. I pushed with the next contraction and I felt a large, warm mass come out. You were born at 10 a.m. on Sunday, June 28. As soon as you were born, the pain stopped immediately. The doctor declared you were a boy and handed you to me on a blue hospital pad. She warned me that since you had been deceased inside me for several days, your skull had softened. You had tiny, perfect ears and beautifully shaped light brown eyebrows. Your limbs were long – it was clear you would have been tall, but you were so skinny.
Joe and I just held you and looked at you for a while. We got out the name list and chose Matthew David for you. The nurse helped us to bathe you and then you were weighed, just 200 grams, and dressed in a sweet white woolen cap and onesie. We spent several hours with you, but had to leave you at the hospital and go home alone.
My arms felt empty for not holding you. My breasts made milk that you would never drink. To say that I’m sad because you died doesn’t really express how much hope I had in you. I’m sad because I wanted to see your little chest rise and fall. I’m sad because I wanted to see your little eyelids flicker and your beautiful eyes look up at me in wonder. I wanted to feel your little hand grip my finger tight. I wanted to see your daddy be utterly in love with you. I wanted to nurse you and change your diapers and get up at 2 and 4 and 6 a.m. to meet your needs. I wanted to see your first smile and your first word, your first laugh and your first step. I wanted to teach you to swim and impart our love of reading. I wanted to see you go to school, make friends and fall in love. I wanted to have pancake breakfasts together as a family every Saturday morning. I wanted to know what interested you and help you with your homework and later maybe help you choose a career. I wanted to see you graduate, get married and have babies of your own.
I miss you so much and I love you beyond words.
With love from your mother,
July 9, 2009
Have you ever wondered what you should do for or say to someone when you learn that they've experienced a miscarriage or the loss of an infant? For someone who has never experienced this type of loss, it can be difficult to know how you can support your friend, family member, or someone in your community.
There are a variety of ways in which you can support someone experiencing this loss. Probably the most important thing to do is to just let that person know that you are there for them and to offer them a listening ear!
But what else can you do to support someone experiencing this type of loss?
To give you some ideas on what you can do to support someone experiencing perinatal loss, we thought we would share some personal tips from one of the volunteers for Aaron's Butterfly Run Ottawa/Gatineau. Amanda and her husband have been struggling with infertility for a few years and finally became pregnant at the beginning of 2017. Unfortunately, this pregnancy ended in a devastating miscarriage at 10 weeks. Amanda shared some thoughts on how her friends and family supported her during this extremely difficult time - some of these may be helpful ideas for you if you are trying to also support someone who's experienced miscarriage or infant loss:
How else do you support those in your network who are grieving? If you have any other ideas, we'd love for you to share them!
We'd also like to mention that its not only important for friends and families to support someone they know experiencing miscarriage or infant loss, but its also extremely important for our medical community to provide support. We'd encourage our medical community to continue trying to better the ways in which this support can be offered - it can be something as simple as having resources from the PAIL network on hand.
Incredibly good news in the Ontario 2017 Budget which announced expanded funding for women across Ontario who experience pregnancy and infant loss. Below is the paragraph in the Budget announcing increased funding for women across Ontario for expanded health and care programs. Great news for everyone that has fought so hard for improved perinatal health care.
"The Province continues to invest in and support families who have experienced pregnancy or infant loss by expanding support services and improving the collection of data to support the commitments under the Pregnancy and Infant Loss Awareness, Research and Care Act, 2015."
Haven't heard of Bill 141? Here's some more info for you:
Here's how you can be part of the movement...
For more information and news updates:
Hello, I'd like to start by introducing myself. My name is Rachel Samulack and I am the mother to 3 children, but only 1 is here with me today. On June 19, 2016, I lost my son Aaron 100 minutes after birth. My husband Rob and I are organizing Aaron's Butterfly Run Ottawa/Gatineau in his memory. If you would like to learn more about Aaron and our time with him, you can read his story here.
Today, my son Aaron would be 10 months old. These milestones are hard. I think about all of the things that Aaron would be doing at 10 months old. He would likely be crawling all over our living room and eating all of the crumbs off the floor. He would have lots of teeth to try all sorts of new food as summer arrives. If he were anything like Gabriel at 10 months, I would be exhausted because he would still be nursing like crazy at night. Now I am exhausted because I am back at work, juggling work/life/being a wife. I would be washing double the amount of cloth diapers. Yikes. These milestones are hard. Some months, I completely forget and other months the 19th hits me like a brick wall. Last week also marked the due date of our first baby who we lost at 10 weeks in September 2013. Pregnancy and infant loss just suck.
The loss of Aaron has shaped the way that I think about the future and the present. I watch the children of friends who are the same ages as my two little ones. I watch their interactions with curiousity and amazement. I feel sad for Gabriel because I know how much fun it is to play (and fight) with younger siblings. I get sick of hearing "Oh, you have lots of time" or "Don't worry, you will have another one." I am so grateful for Gabriel, my lovely, wonderful little boy. However, Gabriel does not replace the loss of Aaron and the expectation that I had for our family when I found out we were expecting Aaron. As Aaron's one year birthday approaches, I have to figure out a way to mark another milestone. A milestone celebrating the joy of his life and the sorrow of his loss. Joy and sorrow are now firmly intertwined in my life. How do you mark these milestones? How do you celebrate your babies who are no longer with us on Earth? I would love to hear from you with the ways that you celebrate your butterfly babies.
Some of you may know Nancy Ann Kerrigan as the Olympic figure skater, and others may know her more recently from Dancing with the Stars. This week, Nancy opened up about the 6 miscarriages she experienced over 8 years while trying to expand her family... check out this article to read more.
Thank you Nancy for sharing your story.
On Friday April 28th, 2017, Aaron's Butterfly Run is hosting Ottawa and Gatineau's 1st-ever film night and panel discussion for pregnancy and infant loss.
What's happening at the event?
Who should attend?
Would you like to do more?
We hope you can join us to raise awareness and support those who've experienced pregnancy and infant loss in our community.
For more information, and to RSVP to the event, check out the Facebook event page:
The Pregnancy and Infant Loss (PAIL) network is an excellent resource for those going through this type of loss.
On October 15, 2016, PAIL posted an article about Rachel and Rob Samulack's experience with perinatal hospice and the story of their beloved son Aaron.