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
Well, its the weekend everyone! If you're planning to head out to treat yourself to some coffee or baked goods on Saturday or Sunday, we'd encourage you to stop by 3 Sisters Bakeshop & Gourmet Creations to pick up a latte and pair of butterfly wings ($30/pair with proceeds going to Aaron's Butterfly Run). The coffee is worth a little trip (if you don't live in the Alta Vista area) and these wings are just too cute to pass up for a little child who likes to play dress up!
For more info, check out our previous post about the butterfly wings.
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.
And what better reason is there to participate than the awesome items up for grabs at incredible prices?
Bidding starts at just 30% of the retail value!
By participating you will also support Aaron’s Butterfly Run Ottawa/Gatineau and help families who have experienced pregnancy or infant loss.
Join the Butterfly Run Ottawa/Gatineau group on Facebook.
The auction goes live June 2 at 9 am.
Make sure to tell your friends, use the invite button to direct them to the Facebook group.
Here are some pictures of some of the items we have in our Auction, but be sure to join the online Auction to see all of the great stuff we have!
This event will be held at Oh So Good Dessert and Coffee House at 261 Richmond Road in Ottawa. In between brush strokes, you can nibble on your favourite goodies from their wide selection of delicious desserts.
Tickets must be purchased before May 29th 2017 and promotional codes are not accepted for this event.
Yesterday (Sunday May 7th, 2017) was the 2nd annual Butterfly Run Quinte. Rachel Samulack, Aaron's mom and lead coordinator for Aaron's Butterfly Run Ottawa/Gatineau, had the honour of participating in the Run. The Run also happened to occur on International Bereaved Mother's Day.
Last year, Quinte conceptualized and coordinated the 1st-ever Butterfly Run. This year in 2017, Quinte organized the Run again, Peterborourgh hosted the 1st Butterfly Run Peterborough, and we're planning the Ottawa/Gatineau event for October 14th! To learn all about the history of the Butterfly Run, we'd encourage you to check out our History page.
Rachel said that the Butterfly Run Quinte was so well organized and she was so impressed by the level of support from the community. Over 900+ people showed up for the event! There were hundreds of participants and countless businesses and members from the community that donated, sponsored or volunteered to help make the event another success! Coordinators of the Butterfly Run Quinte had every little detail planned out - even water stations and finisher goodie bags for the dogs that participated! There were opportunities to honour personal losses and motivational quotes along the route. Rachel was so happy that she was able to attend - both to honour her son Aaron, honour other losses of her friends and family, and learn from the best to help make the Ottawa/Gatineau event a success!
The Butterfly Run Quinte is SO close to reaching their goal of raising $100,000. There is still time to donate. If you wish to do so, you can do so here.
Thank you to Butterfly Run Quinte for all of your support to Aaron's Butterfly Run Ottawa/Gatineau, and for everything you are doing to support your community!
Today marks the beginning of 2 important weeks that are close to the heart of Aaron's Butterfly Run:
May 7-13, 2017 is...
In honour of National Hospice Palliative Care Week, you are invited to attend an information session on Perinatal Hospice from 12:00-1:00 PM on Monday, May 8th at the Children's Hospital of Eastern Ontario (CHEO) (W1305-1306). Perinatal Hospice is palliative care directed towards families/individuals expecting babies who may not live beyond birth or the neonatal period. It is a program that is offered at Roger Neilson House that highlights accompanying the family/individual along the trajectory of pregnancy, delivery, the neonatal period, and beyond into bereavement. The information session will be presented by Lynn Grandmaison Dumond (RN (EC), NP), who was also one of our panelists at our Pregnancy & Infant Loss Film Night back in April.
In honour of CIAW, please follow Fertility Matters Canada where personal stories will be shared throughout the week, including some stories that are personal to volunteers of Aaron's Butterfly Run.
May 7th 2017 is International Bereaved Mother's Day.
Today, Rachel Samulack, Aaron's mom and lead coordinator of Aaron's Butterfly Run Ottawa/Gatineau, is at the Butterfly Run Quinte with other bereaved moms (and dads) to raise awareness for pregnancy and infant loss.
Let's take a moment to remember our babies today and celebrate all parents.
Are you a nurse or health care provider in Ottawa and Gatineau? Subsequent pregnancy support is something that is urgently needed in our community! The Canadian Association of Perinatal and Women's Health Nurses (CAPWHN) are holding a FREE webinar on May 10, 2017 at 12:00PM.
The topic is "The Role of Nurses in Supporting Families who are Pregnant After Perinatal Loss: Care, Leadership, and Advocacy.”
Perinatal loss has a pervasive impact on families. Families who experience miscarriage, stillbirth, or infant death have unique care needs in subsequent pregnancies and beyond that are often not adequately understood or addressed by nurses and other care providers. In response to a gap identified by women who had difficulty finding adequate support and appropriate resources after a late term loss and for a subsequent pregnancy, the Women and Babies Program at Sunnybrook Health Sciences Centre in Toronto, Ontario, initiated the development of an innovative program and new model of care for this population. The Subsequent Pregnancy Program is the first of its kind in Ontario, and one of only a few similar programs around the world.
Objectives of the webinar are to:
Megan Fockler (RN, MPH, Advanced Practice Nurse, from the Women and Babies Program at Sunnybrook Health Sciences Centre) will present the webinar.
In December 2015, Bill 141, also known as "the Pregnancy and Infant Loss Awareness, Research, and Care Act" was enacted by the Legislative Assembly of the Province of Ontario into law, the 1st and only legislation of its kind in North America. Through the Bill, the Ontario Ministry of Health and Long-Term Care committed to undertaking research and analysis on pregnancy loss and infant death that assists those who experience such loss and that informs the establishment or expansion of programs related to such loss. As the Subsequent Pregnancy Program lead, Megan Fockler was involved with advocacy for this new legislation.
The live 1 hour webinar is open to both members and non-members of CAPWHN. The webinar will be recorded and made available to CAPWHN members for future viewing.
To register, send your name and contact information to: firstname.lastname@example.org
Thinking about subsequent pregnancy after loss? There is an event coming up in June in Toronto about subsequent pregnancy after the death of a child.
Come and learn more about this topic with Alexis Marie Chute, bereaved mom, artist, and author of "Expecting Sunshine" - a book she has in print as of April 2017 and a film by the same name.
The June event will provide you with increased knowledge as well as a chance to sit with other parents who are:
When: Saturday, June 24th, 2017 8:30 AM - 12:00 PM
Where: Peter Gilgan Research and Learning Centre (event room 1) at 686 Bay Street in Toronto
Childcare will be available for your children.
Please invite all who matter to you as this topic is important to be supported in!
RSVP by June 17th to email@example.com or by calling (416) 813-6782