Rachel and her husband Rob created Aaron’s Butterfly Run after they lost their son Aaron in 2016. During Rachel’s pregnancy, she received news that no new parent every wants to hear: their son had a terminal diagnosis and wouldn’t survive for long after birth. With a heavy heart, both agreed to carry the pregnancy to term and were able to spend 100 precious minutes with their son before he passed away. During this very difficult time, the Roger Neilson House provide support during the pregnancy and after the loss of Aaron.
To honor their son’s memory and to make sure no one suffers alone through pregnancy or infant loss, they will be spreading the word through Aaron’s Butterfly Run in Ottawa on Saturday October 14, 2017 in Brewer Park. The 1 mile or 5 km walk/run aims to raise funds for the Roger Neilson House. They have also partnered with Mom Friends to produce the Butterfly Box, a resource kit that contains information and items to support bereaved parents in the Ottawa and Gatineau area.
Ahead of the event, Apt613 was able to sit down with Rachel and open a dialogue on this tragic issue.
Apt613: Hi Rachel, can you please tell our readers about your story?
Rachel: My husband and I have been married for 5 years and we thought that when we wanted to start a family, it would be easy. We got pregnant right away, which was great, but we lost our first pregnancy at 10 weeks, in 2013. With that loss, we were not expecting it, we went to the ultrasound (appointment) and thought it would be fine and we would be taking pictures of the baby home. Instead, the (ultrasound) technician was quiet, she left the room, went to get the doctor. The doctor came in and said there’s no heartbeat and that’s it. He sent us home and told us to call our family doctor. He didn’t tell us if there was any support available or tell us what to expect, (they) just sent us home with nothing.
Three months later, after going through the miscarriage by ourselves… we did have help from our parents and our family doctor did help tremendously with the physical aspect of it, but not the emotional side of it. So we got pregnant again and had a son who is three now. The only complication this time was that we were (originally) told he was a girl at 20 weeks, but he ended up being a boy at (the ultrasound) at 30 weeks.
A year later, we decided to have another baby and be done with our family at two (children). We thought that everything was fine with the last baby so we wanted to try again. This time we didn’t tell anyone until 14 weeks because of our first experience and we wanted to have the ultrasound first and make sure everything was fine before we told others about it. We told everyone after Christmas and everything was going great. Then at 19 weeks we went in for our routine ultrasound, even joked about whether it would be a boy or girl, given our last baby’s ultrasound experience, and my mother-in-law having to return all these girl clothes after we found out (he) was going to be a boy.
So the ultrasound was supposed to be a 20 minute anatomy scan, but it ended up being 45 minutes and (the technician) couldn’t tell us what was wrong, but my husband and I could sense that something was wrong. We were told to go home and return for another ultrasound. Then our midwife called on Thursday (of that week) and said that there was major trouble with our ultrasound and we would have to go to the (Ottawa Hospital General Campus) on Monday and follow up there. On Monday, we had another ultrasound at the (Ottawa Hospital) and they determined that Aaron had no kidneys. Which means that he wouldn’t be able to live after birth. At the time, we were told to terminate the pregnancy immediately… but we decide to go home and think about it because it was a big decision to make. Luckily, while we were going through this, our friend who had gone through something similar to this 5 years ago, recommended that we go to the Roger Neilson House.
Aaron's Butterfly Run Ottawa/Gatineau is just 2 weeks away! But its not too late to register! Register via our website (link in our Instagram bio).⠀ .⠀ Join us on Saturday October 14th to support individuals and families who experience pregnancy loss, infant loss, and infertility.⠀ .⠀ Sign-up to participate as an individual, family, or team in our 1 mile family fun route and/or our 5km walk/run.⠀ .⠀ 100% of proceeds will support @rogerneilsonhouse, a program of @cheohospital .⠀ .⠀ .⠀ .⠀ #miscarriage #infantloss #1in4 #aaronsbutterflyrun #butterflyrun #hopebox #thebutterflyrun #butterflybabies #myottawa #ottawa #gatineau #grief #loss #perinatalloss #perinatalhospice #pregnancyloss #miscarriagesucks #infertilitysucks #infertility #1in6 #run #runottawa #runottawa2017 #pinwheels #PAIL
What was going through your mind when you first heard about Aaron’s diagnosis?
It was just shock. Everything, up to that moment, had been normal for him. We had no idea that anything was wrong, he was growing right on track, and it just blew us away. We didn’t think that by 20 weeks, this would happen. After waiting 3 months, we had this false sense of security… when you find out that you’re pregnant, you’re not just pregnant, you start to have your child’s life planned. You imagine them going to school, going to birthday parties… when you lose that pregnancy, you’re not just losing that child of the moment, you’re losing their future too.
Can you tell us about the Roger Neilson House?
Roger Neilson House offers a perinatal hospice program to support parents from the time of diagnosis. They have a social worker, doctor, nurses on staff: they followed us through (Aaron’s) pregnancy. They came with us to our appointments, to check in on us and to see how we were doing. They were just amazing. It was the best support we could have had. We never received that information from the (Ottawa) Hospital (General Campus). It was only after we found out about the program and approached the (Ottawa) Hospital, were we given the pamphlet about the program. So we wanted to raise awareness about the fact that these programs actually exist in Ottawa and make parents aware of it if the time comes for them to need such support.
How did Aaron’s Butterfly Run Ottawa come about?
In October of last year, I had finished my three month’s maternity leave and the thought of going back to work after three months was devastating to me. Instead of being home with Aaron and my other son, as originally planned, I had to deal with Aaron’s loss, put my son in daycare and go back to work. So my husband said: “we should organize a walk with some friends. It’ll be something small, for pregnancy and infant loss awareness, maybe in October of (2017), we’ll order some pizza and do a little walk”. Then I found out about the butterfly run on pregnancy and infant loss awareness day last year.
Can you tell us about Mom Friends and why you chose to partner with them?
I found out about them on Facebook. We were doing a silent auction to raise funds for the overhead costs of the Butterfly Run, because all the registration money for the run will be donated to the Roger Neilson House. So I contacted Mom Friends because… in Bellville… they were raising funds to create a Butterfly Kit for the hospitals… so in the emergency departments and labour and delivery, if you have a loss, they would give you this box that has all the resources that you need in it.
We have a BIG announcement! Thanks to a grant from Just Change Ottawa and our partnership with @momfriendskits, we are pleased to announce that the Butterfly Box will be provided to bereaved families who have experienced pregnancy and infant loss in the Ottawa/Gatineau area this fall.⠀ .⠀ For more info about this initiative, check out our recent blog post! Link to our blog can be found in our Instagram bio.⠀ .⠀ .⠀ .⠀ .⠀ #butterflybox #miscarriage #infantloss #1in4 #aaronsbutterflyrun #butterflyrun #thebutterflyrun #butterflybabies #myottawa #ottawa #gatineau #grief #loss #perinatalloss #perinatalhospice #pregnancyloss #miscarriagesucks #infertilitysucks #infertility #1in6 #run #runottawa #runottawa2017
What are some of the best ways that people can help for Aaron’s Butterfly Run?
We are looking for volunteers to come out and help, we would love it if people can actually participate and run. If people can’t make it out on October 14, the best thing they can do is share their story and raise awareness. If they have a loved one that is going through this, order a butterfly box for them. For us, the (Aaron’s Butterfly Run) is meant to let people know that they are not alone in this.
Thank you for taking the time to open up about your own loss and for helping raise awareness about pregnancy and infant loss.
Thank you and thanks for putting the word out there about this.
For more information about the run, visit the Facebook event page. You can learn more about the resources available at the Roger Neilson House on their website. More information is available on the Butterfly Run Ottawa website.