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personal loss story: Théo

6/9/2018

 
Théo Pagé is the beloved son of Claire and Francois Pagé.  Claire is one of the co-chairs of this year's Butterfly Run, and Théo is one of the babies we're specifically honouring this year with Charlotte & Théo's Butterfly Run.

Claire shared some information about Théo:
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"October 26, 2017 will forever be one of the best days of our lives.  It’s on that day that we finally got to meet and hold our beautiful baby boy Théo.  

Devastatingly, Théo had a congenital diaphragmatic hernia (CDH).  

This occurs in 1 in 2,500 live births.  The cause is not known. The doctors explained that most babies with this condition do make it but need a surgery to repair the hernia a few days after birth.  When Théo was born, he was strong and beautiful, and Claire and Francois were hopeful.

A few hours after birth, Théo was transferred to the Children's Hospital of Eastern Ontario (CHEO), where he received the best care that he could get.  Later that day, he passed, due to complications related to CDH. Our hearts broke into millions of pieces and we were forced to go home with empty arms...  Although Théo’s passing was heartbreaking, we are so grateful for the 39 weeks (in utero) and 8 hours we got to spend with our son.  This little baby brought so much joy to our lives and he will forever be loved.

Pregnancy and infant loss is a heart-wrenching path that no one should have to face alone.   We are forever grateful for the immense support we have received from our family, friends, coworkers and everyone at Roger Neilson House.

We hope to honour our son’s life by raising awareness about pregnancy and infant loss, as well as giving back to Roger Neilson House."

“The loss is immeasurable, but so is the love left behind.”
Please join us on Saturday October 13th, 2018 to honour Théo and all other butterfly babies gone too soon. 
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Pregnancy After Loss: Expecting A “Rainbow Baby”

6/9/2018

 
Today on the blog, one of our Committee members, Rachel Samulack (who was last year's co-Chair along with her husband Rob for Aaron's Butterfly Run), shares her thoughts on pregnancy after loss...

When Rob and I (Rachel) organized Aaron’s Butterfly Run in 2017, the committee wanted the run to be sustainable.  Rob and I feel passionate about sharing Aaron’s story, but we know that there are many other parents out there who would like to share their butterfly babies. Our vision was that the run would have new chairs every year.  This year, the Butterfly Run Ottawa/Gatineau is being held in honour of babies Charlotte and Théo. We are happy to see the run continue and the organizing committee is doing an amazing job of pulling the run together. 

We lost our first pregnancy at 10 weeks in 2013.  I first heard the term “rainbow baby” during our second pregnancy with our son Gabriel in 2014.  What does the term rainbow baby mean?  According to The Bump, "a rainbow baby is a baby born shortly after the loss of a previous baby due to miscarriage, stillbirth, or death in infancy. This term is given to these special rainbow babies because a rainbow typically follows a storm, giving us hope of what’s to come."  

It took Rob and I time to decide to have another baby after Aaron’s loss shortly after birth in June 2016.  We focused much of our grief and energy into Aaron’s Butterfly Run in October 2017, which was amazing as we met so many other bereaved parents and community was formed to support those experiencing infertility, pregnancy or infant loss.  After the run was over, I experienced another early pregnancy loss in November.  These losses have changed my life in more ways than I could have imagined.

Rob and I are now expecting another rainbow baby who is due in early October.  I am conflicted about using the term “rainbow baby” with this pregnancy because I don’t think that Aaron’s life and death was a storm.  My little boy taught me that we can love deeply without regret.  He taught me that life can be hard, but that a mother’s love for her child transcends life on earth.  I learned that we live in a balance.  Life is so fragile and precious.  Aaron was held and loved as he left this earth, which is all that any of us can ask for in our final moments. Gabriel asks about his little brother often and knows that they are both loved. 

As I feel the flutters of our new rainbow baby, I am both scared and excited for the future.  We went into our 20 week ultrasound with baited breath. The ultrasound technician knew about Aaron’s loss and quickly pointed out our baby’s kidneys (at 19 weeks' gestation we found out that Aaron was missing both kidneys which is incompatible with life after birth). The tears flowed down my cheeks for the rest of the ultrasound.  Gabriel has asked us repeatedly if we will get to keep this baby.  Honestly, I don’t know how to answer his questions.  

Pregnancy after loss is challenging. People expect that you will be “fixed” because of the subsequent pregnancy, but that is not how it works.  I have had a couple of people remark how happy we must be because we are now in the “safe zone.”  Through my experiences and those of other bereaved parents, I have learned that there is never a safe zone.  This pregnancy has been full of anxiety and I know that labour and delivery will have its own set of challenges.  We are so blessed to have our families and friends, amazing midwives, our doula and the social workers at Roger Neilson House who have been supporting us through this pregnancy.  

Carol Chevalier, one of the social workers at Roger Neilson House, along with students from the Master of Social Work program at Carleton University have recently completed a needs assessment on support for pregnancy after loss for bereaved parents who are considering pregnancy or are pregnant after perinatal loss. I have included an excerpt from the study below:
“The findings of this study suggest the critical importance of expanding bereavement services at RNH and other bereavement agencies to encompass the unique needs of bereaved parents as they grieve the loss of their infants while considering and/or carrying a subsequent pregnancy. Strongly emphasizing the importance of shared experiences at every stage of a subsequent pregnancy, the results of this study suggest that information and services need to be accessible and available and that supports need to be provided through peer-support models and concurrent groups, both drop-in and closed groups organized around stage of pregnancy. As bereavement models emphasize the longer-term components of actively living with loss, it is incumbent on bereavement services to tailor their programming to fully support bereaved parents as they experience subsequent pregnancies.”
​I am so thankful for the perinatal hospice and bereavement programs that Roger Neilson House provides for bereaved parents and look forward to hearing more about the creation of a program for subsequent pregnancy after perinatal loss. 

On Gabriel's due date (he was four days late), Rob and I went for a walk and saw a beautiful double rainbow over our neighbourhood.  I had no idea at that time that there would be another rainbow baby in my future.   I am hoping that both of our rainbow babies will be with us to celebrate the lives of our butterfly babies at Charlotte and Théo’s Butterfly Run on Saturday, October 13 2018.  
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More resources for pregnancy after loss: 

Websites: 
  • Pregnancy After Loss Support (PALS) is a community support resource for women experiencing the confusing and conflicting emotions of grief mixed with joy during the journey through pregnancy after loss. www.pregnancyafterlosssupport.com

Books: 
  • “Expecting Sunshine: A Journey of Grief, Healing, and Pregnancy after Loss” Alexis Marie Chute
  • “Joy at the End of the Rainbow: A Guide for Pregnancy After Loss” Amanda Ross-White and Lindsey Henke

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