There's no pressure. Everybody likes to break the ice. Thank you.
Thanks for having us here with you guys this morning. We really appreciate the opportunity to speak. Let me get right to it.
This is our story.
On the morning of April 26, 2016, I found our son, Manuel, cold and stiff in his bed. I ran back into our bedroom holding him in my arms and woke up my wife begging her to save him. I called 911 as she was screaming at him to please wake up and fighting to breathe air into his tiny lungs while attempting to not wake up our newborn daughter.
First responders arrived with the police, and they asked us to find someone to watch our daughter as we would need to accompany them to the hospital. I called my father. It was 6:15 a.m. on the day of his 65th birthday.
This scene replays itself in my head daily. The hours that followed were just as damaging and played a large role in the trauma suffered by our family. In the first hour after our we arrived at the hospital, our son was declared dead. We were asked to consider donating replacement heart valves to a child in urgent need. A grief counsellor, who was already in tears, came into the room and tried to console us. The police began their interrogation of us in the same room where our son's lifeless body was. Once they were satisfied there was no foul play or that there was no risk of contagion, we were told we could go home.
A hospital worker told us that a certain funeral home had a cost-free package for families of stillborn children and that perhaps they could help us, although our circumstances were different. We were later told that since we had agreed to donate heart valves, funeral arrangements would be delayed for an undetermined period of time. The doctors told us there was nothing they could do. They didn't know why our son had passed.
That is what we remember. That was it. There was no one to turn to. There was no one to guide us or redirect us to any foundation for help. There was no assistance in place to offset the financial or emotional costs of the following weeks.
In a country that prides itself on caring for its most vulnerable through its social programs, every single door we knocked on was shut, from our family doctor stating that the best she could do was refer us for psychiatric care—and when we were unable to answer some of her questions due to our state of shock we were flat out told that if we weren't more forthcoming we'd have to find a new family doctor—to the NGOs stating that they only catered to families whose children were victims of SIDS or cancer or whatever cause, but not us because ours wasn't the right age and the cause of death was unknown. We had to deal by ourselves with the coroner's office to release our son's body for cremation, with the funeral home, the ordering of a death certificate, the planning of our child's funeral and informing the government of the passing of our son.
All the while the bills kept coming in. We had to pay for my wife's family to come in from the U.S., and then we had to pay for our son's funeral. Thankfully, our employer generously allowed me time with my family and compensation for the weeks following our son's death. Friends and family helped us with funds to offset the immediate costs and with some meal preparations.
After eight weeks, I returned to work. I had no choice. While my employer told me to take all the time I needed, my direct boss hinted that I should be okay by now and I should really be grateful for what I was given and head back to work. It was too soon. I often cried at my desk or took extended breaks to deal with anxiety and anger. Colleagues looked upon me with pity and well-intentioned people came up to me and admitted they were surprised that I wasn't better yet. Having to keep up appearances and put on a brave face took its toll on me and on my family.
Finally, through the Internet I found an organization called Baby's Breath. They referred us to the SUDC Foundation, an American foundation that deals with families whose children have passed from sudden unexplained death, which is the fifth leading cause of death in children between the ages of one and four in the U.S., where statistics are available. While they did not provide financial support, they did provide much needed moral support and counselling to us and our extended family. We are forever grateful to them.
Like many of the families who have testified here, we have taken what life has thrown at us and attempted to make the best of it by making a difference in other people's lives. We are in the process of setting up a charitable organization that will help families navigate through the grieving process. We submitted petition e-1558 asking that April 26 be designated as an awareness day for sudden unexplained death.
We firmly stand with the other families in asking the Government of Canada to help orphaned parents with financial compensation for 12 weeks immediately following the loss of a child, no matter the age. What we would like to see as a recommendation from this committee is an automatic service similar by design to when a baby is born, done by the hospital, not the funeral home or the family. This automatic process would also serve as a trigger for two different financial aids, one from EI because grieving parents are incapable of working, and a second one from child benefits to help offset the costs of burying your child.
Thank you all for giving us a voice in this process.
Like the previous speaker, I thank MP Blake Richards for supporting motion M-110 and the committee for having given us the possibility to speak today on this important topic. I would like to share my own story with the committee as well.
In 2010, my wife Kerstin and I decided that we were ready to start our family and extend our family. We meticulously planned everything. We researched all the dietary requirements and nutritional information for my wife. We completed an infant CPR course. We attended new parent workshops. We attended breastfeeding sessions, and so on. We looked up cribs, nursing equipment, and all those kinds of things. We felt really prepared when we found out that we were expecting a son in March 2011.
The pregnancy was uncomplicated and my wife carried him until the 41st week. We had built a social circle of support at these events that we attended with other soon-to-be parents, events such as prenatal yoga.
However, it all came very differently than expected when Marlon, our son, did not get oxygen during delivery. He suffered severe brain damage and his prognosis was dire. The doctors told us he might live for a few hours. Despite all the courses we had taken and all the research we had done, we felt completely and utterly unprepared. To this day, we are grateful to a doctor who made a referral for us to Canuck Place Children's Hospice here in Vancouver. We moved to their facility a day after Marlon was born and spent another day at the facility with him, making memories before he passed away in our arms.
Looking back, I cannot stress enough how important the support we received from Canuck Place has been for us. We got to spend time with Marlon. We got mementos. We got pictures taken. We got hand and foot moulds, and so on. All these items helped us later in our grief, during which we were supported by the bereavement team of the hospice.
I'm telling you this in particular because of the other witnesses who have other stories, because I realize how lucky we actually were to get the support and how important it was for our grief during our healing. Without Canuck Place, we would not have been given any information about what to do. There would have been no counselling or any chance to speak to other bereaved parents. My heart breaks for families who do not get to spend time with their children, have no one to talk to, or have to figure out all the formalities for themselves.
In fact, we tried for several months to get specialized support in other ways and it was incredibly hard. In my mind, there is a huge gap in the system for thousands of parents in situations such as ours, and the existing support system feels like the wrong way around. If our son had lived, we would have had all our own preparation. We would have had all the connections to other parents to talk to and ask questions. We had relatively easy access to various services such as lactation consultants, occupational therapists, sleep specialists, or counselling in cases such as postpartum depression. When the unthinkable happened and our son died, there was very little outside of the help we received from Canuck Place.
With Marlon, my wife had already been on maternity leave and no further interaction with Service Canada was required. My employer was extremely supportive and I was able to take time off. We both had extended health plans that would later cover some counselling for us, but not for bereavement, only for depression. Again, not everybody has these extended health plans.
Over several months, we managed to get some sense back into our lives and tried again to have another child. We were pregnant again and were considered low risk. Our second pregnancy went without any complications until one morning my wife woke up and couldn't feel the baby move. On December 9, 2012, our son Tobias had died in the womb at 35 weeks' gestation.
As other parents have mentioned, in the weeks to follow the deaths of our children, we were not in any position to think clearly and take care of the most mundane tasks. Our social connections to other parents were not of much help. They were all-too-drastic reminders of what we had lost. We wanted to hide from the world, as seeing a pregnant woman or a family with children was torture. It meant that going shopping, for example, was out of the question. We had no appetite anyway. I can tell you that I've lost friends as a teenager and I lost my dad to a brain tumour, but this type of grief was unlike anything I had ever experienced before. Our world had completely fallen apart.
After Tobias died, we had to make arrangements with Service Canada to organize my wife's maternity leave. During this difficult time, we had to leave our safe home where we could hide and venture out into the world to file some paperwork. We had to stand in the open-plan office and explain our situation. Not only that, but several years later—in fact, two years ago today—we received a letter from Service Canada stating that we had claimed too much money. It took multiple phone calls and letters over several months to clear up with staff that we had not committed any type of fraud for this overpayment. We had simply requested the time to start immediately after Tobias' death, which was on a weekend, and my wife did not go back to work on Monday.
Due to some system settings, the EI system automatically adjusted the start date from the Monday that we had requested to the Monday of the following week. We didn't pick up on it, and my wife's employer started the week we had requested, so there was this one-week gap. We then had to explain over several months that we were entitled to the 15 weeks but that there was this discrepancy.
In 2014, our daughter Thea was born. Given our history, we delivered her four weeks early and spent nine days in the NICU with her. She is now a healthy four-year-old and we enjoy every day with her.
In 2015, we tried for a final time to grow our family but experienced an early miscarriage at seven weeks.
Having personally experienced miscarriage, stillbirth and neonatal death, it is important for me to encourage this committee to look at pregnancy and infant loss holistically. It affects a lot of Canadians in very different circumstances. One of the committee members said earlier that the rules often apply in black and white, without grey areas. Unfortunately, these tragic situations are anything but black and white and require compassion and empathy to help parents get back to being functioning members of Canadian society.
Thank you for allowing me to share our story. Like the previous speaker, I fully support the suggested proposal of giving parents 12 weeks off and automating the process to simplify it and not have this undue necessity for them to follow the paperwork.
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 , 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.
Good morning, and thank you for giving us this opportunity to be a voice both for my Grace and for Jessica's Vincent, and for other bereaved parents as well.
While my story is extremely long and complicated, I will stick to the parts that apply here.
My daughter, Grace Neala Tamsin, was born back in 2013. She was an unexpected, late-in-life surprise, and originally she was a twin. We found out early that the twin probably had a fatal genetic disorder, and if the baby did make it to birth would probably only live for a few hours. We were given no further information than that and sent on our way. Then, at 17 weeks, I contracted a food-borne illness called listeria, pretty much the worst infection you can get when pregnant. Few babies survive it.
When I called my rural maternity ward, their suggestion was to take a warm bath, since we hadn't reached the 20-week viable stage, saying I would just sit in emergency for hours since I wouldn't be a priority.
Our women's and children's hospital in Halifax, the IWK, did admit me immediately, found out the compromised twin had died, and when my water broke two days later, they said I would basically be in hospital on IV antibiotics until the surviving baby was born. Keep in mind I was only 17 weeks pregnant at this point. Nine weeks later, Grace was born in distress at 26 weeks. She had a long haul at the IWK before being released at seven and a half months old. I lived in the hospital with her the entire time.
Fast-forward three years, and Grace is a happy, healthy, normal child with only a bowel issue as a remnant from her NICU days. Even that had been downgraded in early December to minor follow-up. Then, on December 28, we took Grace into emergency with what everyone thought was just another minor bacterial infection to her bowel. Eighteen hours later, she died. Invisible scar tissue that couldn't be seen on any imaging equipment, the unexpected result of an operation at six weeks old, strangled her bowel and caused her death.
Due to the many demands early on with Grace, I stayed home with her. I had only just returned to a temporary job in the summer of 2016, which ended that same December. With Grace's death, I didn't think about EI right away, and when I did finally apply, I barely qualified because of the hour requirements. They asked me why I had taken so long to apply. I told the girl on the other end of the line that my three-year-old daughter had died. She had no idea what to say. I felt I had to apologize to her for making her cry.
She had to pass me to a manager to sort out my application, so I had to explain again what had happened. It was suggested I could apply for sick EI as well if I were to submit a doctor's note, so I went to my doctor who wrote a “bereavement of daughter” note.
Weeks later I got a letter in the mail saying my claim was rejected, with no reason given. I called the same EI manager back. I was told bereavement was not an acceptable excuse for sick leave. I asked what would be acceptable. They weren't able to come right out and say it directly, but when I asked about stress, they implied that might work.
So, I had to go back to my doctor and explain to him that the first note was denied. He wrote another note using stress as the reason. Stress is an acceptable excuse; death of a child is not.
We also received unnoticed automatic deposits of the child tax credit, months' worth of deposits, even though Grace's health card was cancelled, her social insurance number was cancelled, and a death certificate was issued.
Mention has been made by previous witnesses of family and friends stepping in to tend to things—making sure bills are paid, groceries bought, all the little things that need tending to. Those are the things I usually thought about for others, so we just didn't notice until months later when I did, and it all, obviously, had to be returned. When I asked the CRA lady why payments wouldn't just automatically stop in those situations, her response was that because of security, one department couldn't inform another department even when dealing with death.
Through all of this, my husband Neil has continued to work. Some days he copes; some days he doesn't. Luckily he has a very understanding boss, but we weren't in a financial position for him to take any real amount of time off to grieve. Neil has, unfortunately, had a much more difficult journey. Over a year and a half later, almost two years now, there are still many days he can't face the world. Would he be in a better place now if we had had the opportunity to allow him the time he needed not to worry about bills piling up and obligations that needed to be met? I think it certainly would have helped him.
I will turn over our remaining time to Jessica Weatherbee.
Our organization is 25 years old, and here is its mission.
The first component of the mission is support for people who are at the end of their life at the Hôtel-Dieu-de-Saint-Hyacinthe palliative care unit and at home.
Our second component is support for individuals who are bereaved. That is what brings me here today.
We train volunteers who support those people. They were initially selected because they have strong listening skills and an unwavering respect for human beings' ability to take care of themselves. We support individuals who are going through difficult times. We have to ensure that our volunteers do that as tactfully as necessary. Our support is completely free of charge, and I want to stress that: we support people for free. Currently, we have 60 volunteers on our staff.
Our basic training, titled “supporting others is supporting yourself”, is a 30-hour course. After that training, we select the individuals who become our volunteers. It should be noted that not all individuals who attend that training can become volunteers. Afterwards, before they start to provide any support, our new volunteers receive 15 hours of training on helping relationships, titled “the support worker”. Following that second training course, volunteers decide whether they want to support people at the end of their life or people who are bereaved.
The new volunteer can immediately be used as a co-facilitator in a group of bereaved adults. We do not let our new volunteers provide support alone. We show them the proper way to do it. This means that bereaved people are provided with individual support or participate in groups of five to eight people. We are talking about 10 meetings over 10 weeks. Two volunteers provide support in groups, and one volunteer provides support to someone else during individual meetings. So the support provided over those 10 weeks is done right.
The following training courses are added to the basic training. A special approach has been developed for supporting children who are bereaved. It is called “I listen to my little voice”. That is a 15-hour training course. Volunteers who have received that training can support groups of bereaved children. We also have a special approach for adolescents called “discovering your road”. That is another 15-hour training course that enables people who take it to support adolescents.
We have also started to develop an approach to deal with infant loss. Many people in our society often do not consider the loss of an unborn or newly born child as true bereavement. However, the parents, grandparents and other family members are very affected by that loss. So we will provide special training that will enable its attendees to support the clientele affected by a loss that is just as important.
As for family members who have lost a child, we support them through various approaches we have developed. Every bereavement is unique, and we listen to the specific needs of every person who turns to us.
Taking into account the available budget, we register our volunteers for different conferences and training sessions. A number of volunteers have received the training Agir en sentinelle pour la prévention du suicide—acting as sentinels to prevent suicide.
On Friday, November 2, which is tomorrow, a seminar we organized will be held at the Saint-Hyacinthe Convention Centre. Its title is “loss and family”. A number of our volunteers will be in attendance. About 100 people will be there to hear conferences on various topics related to that theme.
Our organization has built an excellent reputation over its 25 years of existence. Bereaved individuals who have used our support have all talked about the improved well-being they experienced afterwards. The meetings give them an opportunity to talk freely about the great void left by the deceased individual. They were able to recognize the emotions they were experiencing and left with tools that would help them in the future. So returning to normal life became easy.
I would like to talk to you about our financial situation.
We receive funding from the Government of Quebec through the community organizations support program, but that money is insufficient. It accounts for only 40% of our annual budget.
Fortunately, we have generous donors who support us financially every year. Despite that, we have to hold two fundraising dinners. When things go well, the money raised by those dinners helps us balance our budget. However, year after year, we are seeing a drop in people's enthusiasm for those types of activities.
Be that as it may, we put many hours into the preparation of those events. The time we are putting into that gives us less time for developing our approaches, supporting our volunteers or strengthening our cooperation with the health centre and our various partners.
Thank you for listening to me. I hope you will take our testimony into account.
I just want to come back to one question earlier: How can the federal government do something for parents? I've actually brought a few examples that I would like to share with you.
I fully reiterate what Paula has said, that you're already hearing from researchers during these witness testimonies. It would be wonderful if there could be a working group or a commission put together to develop material at the federal level along the lines of what Cheryl just mentioned, in terms of saying that this what your grief experience might look like, to just say that what you're going through is normal. A lot of parents feel as though they are going crazy and wonder what is happening to them.
It's just this idea that you can say, “ Look, we know that this is happening. Here is the research on these things. Here's what we know that might help you. Here are some suggestions as to what you can do.” It would be material such as the booklets I'll hold up here.
In B.C., for example, everybody gets these booklets. All people who get a healthy, living child get these very comprehensive booklets that have everything outlined in terms of the next three or four years. It's all researched. It's wonderfully prepared. It's a very good resource.
When your child dies, what we got from the hospital looked like this: self-printed, six pages, double-sided. It actually says on the back “Developed in 1989. Revised in 1999.” It has very limited information, mostly around actually the physical aspects of what your body might go through as a mother after giving birth. There is a half page on the changes in your emotions, and it says in there that if you have further questions you should talk to your nurse, which we did, and they didn't know of any resources, not even the support group that was in their own hospital.
What I would propose is, what stops us from creating a national registry of bereaved parents? It would be an opt-in solution. Because we requested the documents of all our children from the hospital, I got to see all the paperwork that's already going out from the hospital to various organizations. I have one here, the “Notice of a Live Birth or Stillbirth”. It actually has all the information in there that you would need to set up something such as this. It goes to statistics agencies, in this case, a provincial one, the B.C. vital statistics agency, but from there, I think it goes to StatsCan.
That would be the perfect way to say that all this information is going to the federal government and we can basically follow up when this information is submitted to the parents, either with a letter or by email, and ask, “Would you want to be part of network where we can connect you to other families that have experienced something such as this?” You'd just coordinate the peer-to-peer outreach that way.
Once you have that, the next logical step is to extend the registry for providers who are actually providing services to families, to say, “We know that you are in this area and we have these 15 registered providers here.” That could be all the witnesses you have heard today that have organisations, peer-to-peer networks or support groups. They could basically ask to be in that registry and you could just do this matchmaking, which is really the biggest problem for a lot of organizations that I've dealt with in terms of, as I said earlier, this privacy argument.
As an organization, you cannot just go to a hospital and ask for the contact details of everybody who is losing a child so that you can approach them with services that you provide. Usually you try to put an information leaflet together, or you work with some people in the hospital and build relationships, but it's not a foolproof system, because it's people-dependent. If someone is in the hospital at a certain time and a certain nurse is there and knows about that piece of information, it might get to the family, but then another time that person might not be there and it doesn't get there.
I would really advocate for a holistic, central system where these people don't fall through the cracks if someone at that point in time doesn't happen to be in the hospital. If you organize it this way in terms of tapping into the existing processes where notifications are going out to various governmental agencies to record that a child has died, that would be a very logical step to maybe extend that service to have such a registry, and in that way, connect parents to each other and to organizations.
I want to start by thanking each of the parents and parent advocates who are with us today for their courage and their selflessness.
You're taking a very tragic situation that you experienced yourselves and are trying to turn it into something where you advocate for others. Although it may be a way to keep your children's memory alive, of course it won't do anything to reverse what you've experienced. You're certainly working to try to make sure others don't experience and have to go through what you did without support and without compassion. Thank you for your efforts and your work on behalf of other parents of loss.
You've all talked a little bit about that point of contact, generally at the hospital level, where there needs to be some change in terms of the information. It's the sharing of information that you're given, in terms of what's available as supports for parents. That is at a provincial level, but as a committee, we do have the ability still to make a recommendation that this is something that we encourage to see happen. It can be done through a mechanism like the federal-provincial health ministers' meetings, for example, where that's something that's encouraged, that there be that information provided across the country. That's something we can certainly still recommend.
Also, if there are truly privacy issues in that sharing of information at the government level, there's an ability for a form to be signed or something that would allow that to happen. That can surely be figured out. We certainly appreciate those suggestions. I think they're very important and well-taken suggestions.
I want to touch on one particular aspect of that, and I have one other question. I want to have each of you try to address it if you can.
First, we've heard from you today and from other parents about some of the terrible experiences of having to tell the story of your loss, multiple times in some cases, to numerous bureaucrats and civil servants to try to access what might be available to you. Different results have come in different places. I think two things come from that.
First is the idea that there would need to be some kind of a dedicated line that might be available at Service Canada, for example, where bereaved parents or people who are experiencing bereavement can go to talk to someone who actually understands their needs and has the proper information available to them, so that we don't have different outcomes and different experiences amongst everybody. I wanted to get your comments on that. Is that something you think is important to see?
The second one would be on the idea of the benefits themselves. Many of the parents who have come before us have talked about the importance of this being a leave specific to bereavement. Paula's example is a great reason why that's important. Sick leave has been raised, but it isn't possible for everybody for various reasons. Maybe you experienced that you weren't able to get it. In some cases it has been used already—during the pregnancy, for example.
The idea is that benefit would need to be specific and it would need to be automatic, so that we don't have to fight the bureaucracy to access it. It's something that's available to all grieving parents.
I want to get comments from all of you on that particular aspect of it—the importance of it being automatic, specific and universal in terms of a benefit—and the idea of a line that would be available to all parents, where there is someone who actually understands bereavement.
We'll ask all four of you, but we can start with you, Cheryl.