Thank you.
I'm going to speak for both of us, and I am also speaking for parents across Canada who are currently experiencing their own baby loss journeys and don't have the voice to speak today. I will be that voice.
As both a bereaved pregnancy loss and baby loss parent and the co-creator of our local baby loss support program in my community outside of Edmonton, Alberta, I'd like to share our experience and our story and the knowledge that we now possess in this unique and critical area.
My husband Bill and I knew long before we were married that a larger than normal family was something we both hoped to achieve. We were fortunate that conceiving was never an issue, but staying pregnant, in time, became a challenge.
Our first couple of pregnancies were easy. We welcomed our first daughter, Chelsea, naturally and then two years later, we welcomed our first son, Brady.
With our first child I was able to enjoy a paid maternity leave and then decided not to return to work full time due to high child care costs in our area. I ended up being home with our children for more than 20 years, a time that I cherish and wish for all parents.
When it was time for our third child, we were shocked, surprised and very unprepared to experience the first of many losses. Our doctor and midwife did not have any answers for us as our loss was so early in our pregnancy. We took some time to heal, and then we tried again, happily welcoming another healthy, naturally born son, Brodie, the following year.
We took a short break while Bill returned to university. In his final year, we decided it was time for our fourth baby. Again, we experienced two miscarriages before finally welcoming our second daughter, Chynna, just 10 days before Bill's graduation. It was a magical time as my husband started his new career and we began life as a family of six.
Our losses during these years were heartfelt and so very difficult. With the support of good friends and family and each other, we muddled through, but it was our next two losses that changed our world and our path in life. As our children grew healthy, happy and strong, we knew that we wanted our family to continue to expand and were so excited to announce our next pregnancy. One night, later in our pregnancy, I realized I was in labour. Though our son was to be born at home, we decided to head to the hospital with the hopes that they could stop this early labour. Unfortunately, I labour too quickly and there was nothing anyone could do.
We were treated with grace, dignity, care and compassion, but the following morning we arrived home with empty arms and broken hearts. We named our son Bretton-Elijah Lucas and his birth and death altered our lives forever.
Within days we knew that this wasn't a loss that we could do on our own, that we could figure out, and with community support we created a program in our hamlet called H.E.A.R.T.S. baby loss. We began in 1996 and today we have supported, counselled, held and cared for over 4,600 families in person, by phone, by email and even on Skype.
Our services are broad. They cover western Canada, northern Alberta, into the territories and across the States. We include support groups, online chats, home visits, counselling, programming for siblings, a newsletter, an annual candlelight service and resources for anyone seeking support.
Just over six years ago we launched the Baby Steps Walk to Remember, which MP Blake Richards has attended. He passionately spoke about motion M-110 with our families. This is a day for anyone touched by the loss of a precious baby.
On October 14, just a few weeks ago, we had our walk at the Alberta legislature grounds in downtown Edmonton. We walked with just under 300 parents, siblings, friends and family members as we honoured 206 babies. In six years over 1,800 people have walked this path, representing just over 1,200 precious babies.
Every year in Alberta almost 16,000 babies are lost during pregnancy or after birth, with one out of every four documented pregnancies ending in miscarriage, and over 400 babies dying by stillbirth, like our son, Bretton. Without a breath and without opening his eyes, Bretton's short existence has created support, education, awareness and compassion for those who suffer this unique and tremendous loss.
After Bretton's birth and his death, we often asked the question, “Why?” In time, we have come to see his purpose was to be the catalyst for this programming. We both feel fortunate to devote our lives to this needed cause.
As we developed our program, we were encouraged to offer other options to families in our community. We have created a family life education centre along with our baby loss program. It was amazing work that included our family, our community, friends and co-workers.
Then it happened again. We waited some time, to heal and to create our family life centre. Our doctor and midwife were confident that our stillbirth experience would not be repeated as I was still young and healthy and stillbirth is rare. On the evening of August 21, 1998, in the comfort of our home, we welcomed Ciara-Rose Kennedi with a quick hello and a very sad goodbye, all in a moment that stopped our lives once again.
This time we knew how to find support and how to incorporate this incredibly hard loss into our lives once more. Even with all our experience and knowledge and with community around us, our arms were once again empty and our hearts once again broken.
Over the next few years, as we continued to grow in our healing, we experienced three more miscarriages and decided that, without a medical reason for all of our losses, we would focus our energy on continuing to raise the four amazing children we had. I think it is important to share that, although we had and are blessed to have raised these four now adult children, it does not diminish our grief, because we know exactly what we've lost, not just the dreams and hopes for a healthy baby in the future with our hoped-for children, but significant losses for that first tooth, the never-taken steps, the absence of the first day of school, and all the way up to those grandchildren we won't get from those sweet innocent babies who died too soon.
In time, we renamed our centre, combining the first part of Bretton's name and the middle of Ciara's name to create our legacy project, the BriarPatch Family Life Education Centre.
We have four healthy children: Chelsea, Brady, Brodie and Chynna. Two significant stillbirths, Bretton and Ciara; six early miscarriages, Birkley, Cabriola, Cambria, Beau, Cree and Bentley: These are losses many people won't ever experience, but for those who do, the darkness of those early days of loss become the darkness of the days of grief that follow for the rest of their lives.
This is not a grief that can be simply overcome by reading a book or attending a support group. Baby loss for most families requires intense care from a physician or caregiver for the physical impacts, specialized support for the emotional impacts, community support for the social impacts, educated support for the spiritual impacts and psychological support for the cognitive impacts.
This is a grief experience that is not like any other. None of us enter into our pregnancies with a checklist of what to do if we lose our baby. None of us have thoughts about how to handle a miscarriage, how to handle the broken hearts and the fractured relationships, where we would bury our baby, who would do the service and what style of casket to choose.
I'd like to now share my thoughts in support of motion M-110. This initiative was first brought to our attention by MP Blake Richards, and we are happy, not only as a family, but as an organization, to provide insight into the plight of our families and the impact of baby loss on families and the community at large.
For the families who have been able to access employment insurance benefits for the maternity and paternity leave, it is heartbreaking to hear the stories of those who find themselves cut off from the benefits once the system learns that their baby has died. On top of a reduced income already, there are many costs associated with baby loss, and most families are not prepared for the challenge. Paying for a funeral is costly, and although the funeral homes are often generous in helping with reduced costs, in the end there are still items we need to pay for. If the father or partner takes time from work to support the mother as well as for his own grief, there may be additional lost wages to think about and cover.
Our medical system covers many procedures, but with a baby loss there may be medications or services that are not part of the provincial health care plan or supported by private benefits. Counselling may be covered, but the costs can be high, and very few appointments are covered.
Children and teens, the siblings, are greatly affected by baby loss, which results in missed school days and counselling appointments, and they may present with behaviour that could begin as they struggle to understand what has happened. Children and teens do not possess the language to fully talk about their feelings and emotions, and this is where we see adverse behaviours that could, without support, escalate into experimenting with drugs and alcohol to dull the pain and numb the experience. Mental health issues could formulate, and this is another cost to the system.
We need, as a country, to support these grieving families as they journey through baby loss with legislation that gives them the opportunity to retain their benefits to give them time to heal and time as a family to work through this tremendous grief journey. We need funded community supports for the parents, the children, extended family members and the community at large. Baby loss affects us all in lost work time, lost social time, lost physical time and lost emotional time.
As a mom at home during our children's growing up years, I did not qualify for maternity benefits beyond our first child, but a benefit that would have provided my husband with some time off to be home with us as I struggled physically and emotionally to be with our children as they tried to grasp the concept of grief and loss and, most importantly, to have time for his own grief to work through the complexities that affected our relationship and to grow in this dark time would have made a world of difference. Instead, he had to return to work, hiding his tears and his pain while being strong for me and our children.
We figured it out, and although not every marriage survives pregnancy or baby loss, our opportunity to help others has strengthened our commitment to our marriage and our family. It's always a work in progress but, it's healthy and whole.
Today, if asked what would help these hurting and vulnerable families, what we need and what would make a difference, I would reply with the following: Restructure the current system for families to access and retain the full benefits they are entitled to under the Employment Insurance Act. Create a new benefit, as other families have hoped for, of 12 weeks of comprehensive grief supports, across Canada for all baby loss families in all communities; a concrete benefit leave for both parents and partners to cope with the physical, emotional, social, cognitive and spiritual impacts of their unique pregnancy or baby loss grief; a leave that is simple to provide and simple for parents to apply for, ideally automatically when the news of their pregnancy or baby loss is entered into the system, with no hoops to jump through. Create sustainable and long-term funding and support for specialized programs like ours that offer the peer-support aspect.
We are often referred to professionals, and as a professional in the community, I'd like to say that those supports are lovely, but parents really want to talk to other baby loss families. If we can create baby loss facilitators with professional resources, this is ideal.
Funding this area would reduce health care costs down the road for those who seek support, education and resources, if they could have it at the time of the loss and when they need it down the road, without barriers and without personal cost.
We trust that this information provided today is helpful to this committee. We offer our experience and expertise to those who examine this issue, those who will bring forth the recommendations and those who will decide the outcome of this important motion for our grieving pregnancy and baby loss families across Canada.
Thank you for your time in listening to our story today and for your support in making this critical issue a positive and healthy experience for all.
