OCTOBER 15TH Pregnancy and Infant loss Remembrance Day Brian Roche Laclayland@gmail.com Our Story…. In January 2006 we finally got the news that we wanted and waited for so long. We had already one child Lynn who was then 6, just the right age to become the big sister that she longed for. In February we had the first scan at 12 weeks, everything seemed fine but the baby was a bit small so they asked us to come back again in a few weeks. On March 13th we went for this scan, we had brought Lynn with us this time to get her involved After about 10 minutes of scanning we were asked to put Lynn outside and told something wasn’t quite right and to come back in an hour to see a specialist. We didn’t know what to think, the longest hour ever went passed and we were called in. We were told that firstly we were having two babies and then in the next breathe that they were conjoined, both sharing a single heart. Our world just fell apart. We were told that nothing looked good at this stage and that nature would probably take its course soon. Also because of the rarity of conjoined twins we were advised not to tell anyone. A week later we got an appointment to see two consultants and given a bit more detail. Our babies were joined at the upper chest, sharing a single heart and a pair of lungs and the chance of progressing pass 16 weeks was very unlikely. But they continued to grow and at 18 weeks you could feel them move. At 20 weeks we found out that it was 2 girls, we named them Lucy twin 1 on the left and Ellen twin 2 on the right. By now we had told everyone that Liz was expecting twins... Even though we knew what the outcome was going to be, it still was our great news that we were going to have two very special daughters. These girls were fighters, they were beating all odds and jumping over every hurdle that they came up against. We were up every two weeks for a scan and we couldn’t wait to see that tiny heart beating and to see the girls getting bigger and bigger. One week you’d be told that fluid was developing around Lucy’s brain which could be the start of the end but 2 weeks later it would be gone. At 22 weeks Liz had an MRI scan to get more detail and a team from Great Ormond Street hospital in London got involved but the outcome was still going to be the same. Once the magical 24 weeks was reached it was weekly for a scan. This was a week we were never supposed to reach. Lucy and Ellen always put on a show for their mum and dad. Even one time you could see Lucy slap her sister in the face. We brought Lynn up with a few times, she was delighted to see them move. We told her that they were a bit sick but left it at that. How could we explain the truth to her when we couldn’t grasp it ourselves? Over the next few weeks we continued leading our double lives because to the outside world everything was fine but we knew what heartache lay ahead. As Ellen and Lucy grew bigger we made our memories of their lives. They used love dance music on the TV and having a bath where you could hear Lynn laughing all over the house at the sights of legs and hands sticking out at all angles. Lucy was always the first to wake and within a few minutes have her sister awake. They were surpassing all odds and determined to say hello to us. We were told that they might live for 5 minutes or an hour they just didn’t know but their time would be short. On August 3rd at 33 weeks the girls decided to say hello to us, they were due to be delivered on the 14th but as throughout this pregnancy did everything their own way. Our girls were born, weighing just over 7lb 2oz. Ellen officially been first but Lucy got her say in too, her hand was on Ellen’s face. We had them christened then anointed and 35 minutes later they passed away in our arms. Our girls had lived their lives. Liz was in hospital for 6 days. Over those days Lynn was able to hold her sisters, doing ring a ring a rosy on their hands and doing this little piggy went to the market with their toes. We took tons of photos. We brought them home in Lynn’s mosses basket and kept them at home for 2 nights before saying goodbye. .Lynn drew pictures for them and we all placed gifts in with them. We had a private mass at home and then to the grave yard. Lynn released two pink balloons. They weren’t tied together but the both floated off side by side just has our girls had been for their lives Our two girls, even though their lives were so short they showed us so much courage and strength and put up such a fight for life that any parent would be so proud to have them as their daughters. And with all the sorrow they gave us so much joy. Later the following year, we had two sequent miscarriages but for us a couple never gave up hope and in November 2008 our daughter Abbie as born. As a parent, one of the most unimaginable things ever to happen to you is the loss of your child, there isn’t any words to describe that feeling inside of you and the emptiness that you feel. I’m a dad to six children, four of whom have passed. I remember in the early stages after losing our daughters in particular, two things that had me in a major panic…one was that I’d forget them, how they looked, their smell, that sense of holding them. I remember meeting a couple in their late 7o’s at a remembrance service and it struck me how they comforted each other remembering their loss from so many years ago and strangely enough I got great comfort from that knowing I never forgot them, no matter how many years would pass. The second was the feeling that we were alone in this journey, even knowing our family and friends where around us but in my mind, this never happened to no one else, it was just us. October 15th quickly showed us that we weren’t alone, this day and the event of lighting a candle showed us the worldwide support for families was there and it was been openly acknowledged by this one simple event. This day allows bereaved parents/families to unite together in the remembrance of their loved one and also for non-family members to show their support. The benefits for acknowledging October 15th as Pregnancy and Infant Loss Remembrance Day would be far reaching. It allows us to come together as a country to celebrate the lives our children. It would be a platform for breaking the silence on pregnancy loss and the isolation that families feel at the loss of a child. For those who were bereaved many years ago, it also gives them an opportunity to openly express their loss that for so long may never have been dealt with. As a Dad, I fully believe that things happen to us for a reason and our children choose us and for that alone, I’m so proud that I was chosen to be their dad and that they came into our family albeit too brief. By acting to get October 15th passed here in Ireland as Pregnancy and Infant Loss Day, it would be an ever lasting legacy not alone our children but to all other families and their children. From a parents point of view 'When our little girl died it was so unexpected and sudden that sometimes it doesn’t feel real, it is so important to us to keep her memory alive, to acknowledge her life albeit brief, in whatever way we can. Lighting a candle on October 15th means we can keep her memory alive forever and give our little girl the recognition and respect she deserves. It also makes it acceptable for people to talk about the loss of a baby and be supported in that loss'. Paddy and Maria Cahill. Its History...... Robyn Bear, Founder, and Lisa Brown, Co-Founder, of www.october15th.com envisioned a day when all grieving parents could come together and be surrounded by love and support from their friends and families, a day where the community could better understand their pain and learn how to reach out to those grieving. This would be a day to reflect on the loss yet embrace the love. While our babies’ lives were so brief, they were also very meaningful. Yet, there was not a time to talk about them. Our society seemed to forget or perhaps, simply didn’t know how to reach out. Since October had been proclaimed “Awareness Month”, she chose a day, in the middle of the month to become, “Pregnancy and Infant Loss Remembrance Day”. They then asked everyone in all times zones, worldwide, to join them in a candle lighting ceremony at 7pm on October 15th, allow your candle to burn for an hour thus as the time move forward in each time zone it creates a circle of light around the world. As a result of the American campaign effort, headed up by Robyn Bear, Concurrent Resolution 222, supporting the goals and ideals of National Pregnancy and Infant Loss Remembrance Day, was passed in the House of Representatives on September 28, 2006. House Concurrent Resolution 222 proclaims October 15 of each year to be Pregnancy and Infant Loss Remembrance Day in the United States. The Canadian Foundation for October 15, also known as the CFO is the official foundation of Pregnancy and Infant Loss Remembrance Day Canada. The CFO is leading the federal campaign to recognize October 15 as Pregnancy and Infant Loss Remembrance Day Canada. The goal of the CFO is to obtain an official day of remembrance, October 15 of each year, to ensure that all Canadian families who experience the loss of a child during pregnancy or shortly after birth are given the opportunity to acknowledge their loss, seek support, and honour their child’s memory in an understanding and supportive atmosphere. The CFO works to promote national and international pregnancy loss and infant death awareness, remembrance, and support enabling the larger community the knowledge and skills required to assist and meet the needs of families who experience pregnancy loss and infant death. History The Pregnancy and Infant Loss Awareness Movement began in the United States on October 25, 1988 when then-American President Ronald Reagan designated the month of October 1988 as Pregnancy and Infant Loss Awareness Month. The October 15th Pregnancy and Infant Loss Remembrance Day (PAILRD) Campaign began in 2002 as an American movement started by Robyn Bear, Lisa Brown, and Tammy Novak. Together, they petitioned the federal government, as well as the governors of each of the 50 states, and by October 15, 2002 (the first observance of PAILRD) 20 states had signed proclamations recognizing the date as such. As a result of the American campaign effort, Concurrent Resolution H. CON. RES. 222 Supporting the goals and ideals of National Pregnancy and Infant Loss Remembrance Day was passed in the House of Representatives on September 28, 2006. To date, all 50 American states have yearly proclamations, with Arkansas, Kansas, Kentucky, Louisiana, Missouri, New York, Rhode Island, and South Dakota enacting permanent proclamations. The Director of the Canadian Pregnancy Loss and Infant Death Awareness and Remembrance Campaign, Terra-Lynn Coggan, joined the American movement in September 2004 and took on the role as the Canadian Director for October 15 Pregnancy and Infant Loss Remembrance Day and began the Canadian Campaign. The Organizer of Pregnancy & Infant Loss Awareness “A Walk to Remember” in Vernon, BC Canada Jennifer Patrick started her fundraiser campaign in October 2004 after the Stillbirth of her son Connor. In October 2005 Jennifer worked with the Attorney General to help get a Proclamation approved. October is now declared as Pregnancy and Infant Loss Awareness Month in British Columbia, Canada. On October 12, 2005, when New Brunswick received official recognition of October 15 Pregnancy and Infant Loss Remembrance Day, Coggan resigned as the Canadian Director for the American Pregnancy and Infant Loss Remembrance Campaign and independently launched The Canadian Pregnancy Loss and Infant Death Awareness and Remembrance Campaigns. Since New Brunswick’s Declaration of October 15, Pregnancy and Infant Loss Remembrance Day the province of Nova Scotia has followed suit with a similar declaration. The provinces of Ontario and Manitoba are currently considering a declaration. The campaign for Pregnancy and Infant Loss Remembrance Day in Australia began in May 2008 when Nicole Ballinger of the State of New South Wales (NSW) approached her State and Federal MPs to request their help in establishing this Day. Although aiming for a nationwide declaration, Mrs Ballinger took this two-pronged approach as she had been advised that federal motions often get passed once they are first passed at the State level. Guided by her MPs, Joanna Gash (Federal) and Shelley Hancock (State), Mrs Ballinger lobbied both levels of government beginning in 2008: utilizing petitions, the internet and social media, and repeated correspondence with Australian Prime Ministers, NSW Premiers, Health Ministers, Senators and other MPs. In support, Mrs Gash and Mrs Hancock continued to present this motion in parliament at the State and Federal levels. On October 14, 2011, Mrs Hancock and NSW Health Minister Gillian Skinner announced the official declaration of Pregnancy and Infant Loss Remembrance Day in NSW. To date, Mrs Ballinger continues to lobby the Australian government with the support of Joanna Gash, to get Pregnancy and Infant Loss Remembrance Day officially declared across Australia. Ideas for October 15th • Light candles and display them in your windows. • Contact local Radio and News stations and have them announce that it is October 15th, Pregnancy and Infant Loss Remembrance Day. • Leave your porch lights on. Have radio and news stations announce this as well. • Release butterflies (Can be expensive, but is very beautiful, Use a search engine such as yahoo and type in butterfly release) • Release Doves (You can rent doves that are trained to fly back to the owner) • Sponsor a candle lighting ceremony in a park, church, or local hospital. • Send off a pink or blue balloon with your Angel’s name and/or picture. (Warning Please: If you do this, only send one balloon per child. This is very dangerous For birds and wildlife. The animals can eat the remnants of a balloon and die) (As Beautiful and wonderful as it is, I can’t personally recommend it due to my love For animals) Letters of Support October 2014 To whom it concerns, As the bereavement support nurse in the maternity department in Cavan General Hospital I wish to show my absolute support to Brian, Feileacain and their team in seeking to formalise the 15th October as Baby Loss Remembrance in Ireland. I support families within the north-eastern region who have suffered the unfortunate and heart wrenching loss of a baby during pregnancy or shortly after birth. This loss creates a unique set of grievers as they do not only grieve for the loss of that physical little being but also for all the hopes, dreams and aspirations they had for their baby. I see, daily, the physical, emotional, psychological, social and spiritual pain that these families carry with them for the rest of their lives. I watch the dynamic of the family change and readjust to a life that is forever changed for them. One of the less obvious losses many of these families encounter is that they have no remains to bury (in terms of miscarriage) which leads to lack of a physical place to go to express their loss. Often they don’t have a particular day of which their baby died (especially in Intra Uterine Death) so there is uncertainty regarding anniversaries and special times of remembrance. Many of the families who I meet have had losses spanning back over decades, many of which, were never formally recognised and therefore never formally grieved. And often times these families find it difficult to talk to their own families as the grief they express is so enormous it is often overwhelming for outside families to understand. Within our culture we sometimes, in an effort to protect from hurt, instead avoid all together the issues. Families often feel unable to openly grieve for their baby, particularly if some time has lapsed and they assumption is that they should ‘be ok by now’. The key to the care of parents and families who have experience perinatal or neonatal death is communication and community support. The service of remembrance which I have run within this community for the past 9 years is based entirely on these 2 principles. We offer these families a safe place to grieve and remember, within their own community and amongst families who have similar losses and therefore journeys of grief. For families who are unable to attend this space of remembering, we have radio interview and advertising in local newspapers, parish bulletins and in health centres in order to open channels of communication and in some way de-mystify grief and baby loss. Formalising the remembrance of these babies sends a clear message of support, compassion and hope to these parents. It allows the boundaries of communication to open to these families and in turn the burden of their grief to be uplifted from them and taken on by the community as a whole. I have no doubt that Ireland should, recognise and acknowledge these losses and this particular group of people on a formal level in keeping with international practices. I wish to formally recognise the work and dedication of Brian, his family and the team at Feileacain who are an inspiration and an invaluable support to these vulnerable families. Louise Dempsey, RN(Child),ENB405, MSc.Bereavement October 12, 2014 Brian Roche Ballymacoda, Cork Ireland Dear Mr. RocheI am so very excited to hear of your upcoming audience in front of the Health and Children's Committee petitioning to recognize October 15th as the official Pregnancy and Infant Loss Awareness Day in Ireland. I don’t have to tell you how important, validating and healing such an official day can be for so many grieving parents. It not only provides a launching platform for healing ceremonies, events, walks or candle lightings but it also lets parents know it is ok to mourn and grieve openly which is so very important to the healing process. In addition, official days help to unite and rally support around those who need it ultimately increasing the sense of community and wellbeing in a population. In closing, best of luck to you and your team and thank you for helping heal the hearts of grieving parents in Ireland. Lori Esteve SOBBS (Stories of Babies Born Still) Founder USA Dear Mr. Roche and Members of The Minister of Health, I am very excited to hear about the possibility of Ireland participating in the success of October 15th, Pregnancy and Infant Loss Remembrance Day. In 2006 the House of Representatives here in the USA unanimously passed October 15th as a day of remembrance. It has helped many families in their grieving process. You and your members have our full support and are happy to share any information you made need to help pass this in Ireland. Sincerely, Robyn Bear, Founder of October 15th http://www.october15th.com robyn@october15th.com contact@october15th.com