‘Wave of light’ on October 15th in support of those who have lost a baby
Launching our “Remember Our Names” Campaign as part of Pregnancy and Infant Loss Remembrance Month
The public and the business community are invited to join millions of people worldwide in raising awareness of pregnancy and infant loss on Friday, 15th October 2021.
Féileacáin (Stillbirth and Neonatal Death Association of Ireland) is calling on people throughout the country to participate in the global ‘Wave of Light’ at 7pm on that evening. By doing so they will encourage conversations about the loss of a baby and impact it has on people affected by miscarriage, stillbirth and neonatal death.
Féileacáin spokesperson, Mrs. Nina Doyle, said “At 7pm on October 15th Féileacáin have organised for over 100 monuments, landmarks and buildings to light up blue and pink in memory of our precious babies. These include Maternity Hospitals, OPW, Council and Corporate buildings. We are asking everybody to show support by sharing photos of buildings lighting up near them or by simply lighting a candle at 7pm and sharing their photos on social media using the hashtag #Feileacainwaveoflight.”
October is Pregnancy and Infant Loss Awareness month and Féileacáin are also launching their “Remember Our Names” Campaign. Féileacáin are calling for an immediate amendment to Section 8 of the Stillbirth Registration Act 1994 to make the Stillbirth Register public. Presently in Ireland only parents in Ireland can view their baby’s details. Féileacáin chairperson Máirie Cregan explains “When my daughter Liliana died her story didn’t end and yet according to the state it did. We recognise that the stillbirth register was made private with the intention to protect the privacy of families but that is not something bereaved parents want. It is something we find parents feel very strongly about. To respect families who may have wanted this in the past we recommend opening the Stillbirth Register immediately, to keep records prior to this date private but give parents whose babies were born before this change the option to opt out and make their babies record public. This would ensure every bereaved parent is given respect and a choice”. Stephen Smith’s Mam Caroline adds “Why are these details hidden? We are not ashamed of our babies. We want our babies to be seen and traced on our family trees”.
For more information please contact Nina Doyle on 087-7793076 or Máirie Cregan on 0861805805
Liliana’s Story:
Liliana was born on Sunday January 8th 2006. Her due date was January 7th, and I had been booked in to the ante natal clinic on the previous day, January 6th (Nollaig na mBan) for what was expected to be my last appointment. I didn’t feel ‘right’ that morning; the baby was very quiet – but I had been told often enough that ‘they get quiet at the end’, which I now know to be totally untrue, and that this is a sign that all is not well with baby. At the time though I believed it. It didn’t occur to me that she wasn’t quiet – she was just slipping away. The clinic was very busy that Friday and the morning wore on, while I fielded phone calls and texts from family and friends wondering ‘are they keeping you in’?. As it happened I was the last appointment of the morning and was finally seen by the consultant at 2pm. And then our world changed forever.
Liliana was born into a large family (who were beside themselves with excitement awaiting her birth). The sibling nearest to her in age was almost 12 and her eldest foster sibling was 27. A few of her 10 siblings and foster siblings would accompany me to each appointment and wonder at the little life they saw growing on the scan. It is one of life’s cruel ironies that the sister who accompanied me the day Liliana died, would herself, 14 years and 14 days later lose, her own 3 day old son in the same hospital.
Stillbirth in most people’s minds is a single event. The baby died and was born. Sad, tragic even, but a life event that ‘happens for a reason and it’s best to move on’. When it happens yourself, you realise that it’s not an event, it is a life-long process where you learn to live in a world that has shifted and you no longer know your place in it. Finding a new place to exist and learning to live with the fact that very few will understand what has happened to you, is one of the greatest challenges facing parents bereaved through stillbirth, and this hardship is compounded by the fact that our babies are barely recognised as having been born at all by our government.
One of the loneliest sights you will ever witness is the still and silent screen of a sonographer’s monitor as they try frantically to find your baby’s heartbeat. The growing sense of dread as the consultant tried to find Liliana’s heartbeat on that day will stay with me forever, along with the shock of knowing that I would have to give birth to a baby – who was already gone. Other mothers have spoken about the cruelty of nature that decrees our bodies behave as if our baby was born alive and needing us to tend to their needs; fathers have spoken about their helplessness and anquish as they watched their partners in labour, but somehow we manage to survive all this. We get through funerals and the empty days following the burial or cremation of our child, and then find the strength to register the birth of our baby, within the timeframe stipulated. For me this was the real beginning of the realisation that being parent to a stillborn baby is one of the most unacknowledged of family traumas and in essence ‘no one gets this’.
We returned to the hospital where Liliana was born to register her birth and the information leaflet on registering my child informed me that Liliana would be registered in a Stillbirth Register, and that nobody had access to her details only her parents and grandparents. Her siblings, nieces and nephews have no right to know about her – future generations will not be able to include her in our family trees, despite the fact that she has had such a profound impact on her family. I felt it was an insult to her to hide her away like that. We are not ashamed of her, we celebrate her and are grateful we have had her in our lives. Yet as far as the powers that be are concerned she may as well have never existed.
Liliana’s story began in when she entered our world – it did not end there. She was here too and we want her name remembered.
In 2008 seven bereaved parents formed Feileacain (Stillbirth and Neonatal Death Assocation of Ireland) and one of our aims was to campaign for the opening of the stillbirth register, with an opt out clause for those parents who wished their child’s name to remain private. Our babies were born – and they deserve to be recognised and have their names remembered.
Liam & Grace’s Story:
On Friday 23rd March 2018 my biggest wish in life came through and I became a mammy to two beautiful, precious little babies, Liam and Grace. We had a tough journey to have them and struggled through 4 rounds of IVF and 3 recurrent miscarriages before finally becoming proud parents to Liam and Grace. Sadly it wasn’t the fairy-tale moment we had dreamed of as I had suddenly gone into premature labour at 22 weeks and 6 days. Liam died just as he was born while Grace lived breathing on my chest for 31 minutes before she joined her big brother.
Liam and Grace were always together. Their journey started and ended side by side. They grew together in my womb. Each week I’d read what stage they were at, I loved when I read at 14 weeks that they were now aware of each other and at 18 weeks that they were interacting together more. When they were born they were both placed immediately on my chest, side by side. They stayed close together the whole weekend. Because of the wonderful volunteers in Féileacáin we got to spend a special few days together and we did our best to squeeze a lifetime of love and memories into 3 short days. We made every second of every minute count. Féileacáin made it possible to bring them home, take their precious handprints, introduce them to their loving family and take photos which we will treasure forever. As our time together was heartbreakingly short I was so aware that I wanted it to be fair and to spend equal time with them both. I wanted them both to feel every single bit of my love. I’d ask their daddy to time me as I held Liam in my arms, kissing and cuddling him before it was his sister Grace’s turn. And when the dreaded time came to say goodbye they were placed side by side in their small white coffin. As heartbroken as I was placing them gently into their coffin it did bring me some comfort that they were together, like they always were.
But then I found out that although Liam and Grace were born and died together only one of them is publicly recognised as our child. Under the Stillbirth Registration Act 1994 we were entitled to a Stillbirth Certificate for Liam as although he was born before 24 weeks, he weighed more than 500g and as Grace breathed we were entitled to a birth and death certificate for her. I felt that by getting these certs for Liam and Grace and by formally registering our children, we were letting the world know that they existed and that they matter. It was months later when we found out that the Stillbirth register in Ireland is private. That means that only myself and their Daddy can see Liam’s record and know that he was born. How does this make sense? We don’t need to see Liam’s record but we worry about the future. By making Liam’s stillbirth certificate private it means that if anyone is doing a family tree in generations to come it will look like only Grace was born, that myself and Alan were parents to one child, not two. And that just breaks my heart. Liam and Grace both matter, they are both loved equally by all their family.
It is an honour to be part of Féileacáin’s “Remember Our Names” campaign which urges the Government to amend Section 8 of the Stillbirth Registration Act 1994 and make our babies records public as it means so much to us and also to so many other proud parents. We don’t want to hide our children and the Government need to understand that.
If Liam and Grace lived I would want to give them the World, now the least I can do is have the World recognise them both as mine and Alan’s precious children.
Stephen Francis Smith’s Story:
October 20th 2015 is the day that Caroline and Martin Smith were welcomed into the Feileacain family. To be honest it’s not a family we ever wanted to be a part of but we are so grateful to have people in our lives who understand and respect out grief journey.
At 2.45pm, Stephen arrived silently into this world. Born too soon at 20 weeks and 2 days’ gestation, he arrived silently weighing in at 420g. The image of his Daddy and big sisters, with the cutest button nose and the longest fingers and toes. Our baby boy was perfect in every way. The only problem was that he died in utero as a result of an infection and because of that he was born too soon.
Shortly after Stephen was born the Chaplain from the hospital came in and asked us if we would like a memory box from Féileacáin. To be honest, the only thing I wanted was for everyone to clear out of the room and scream my lungs out. Martin, being the voice of reason, told her he would take a memory box and would have it in the room for when I was ready. That box turned out to be a treasured box which contains so many of Stephen’s little bits. A gorgeous, soft, white blanket that was knitted with love by a lovely volunteer. Ink so that we could take prints of Stephen’s hands and feet. A beautiful reminder of the imprint he has left on our hearts. A little container of balm to keep his lips soft, a beautiful candle, information about what Feileacain do and more importantly, the knowledge that we would be fully supported on our journey. We also received 2 beautiful teddy bears. 1 bear for Stephen and 1 which I kept. While we were in hospital, I rotated the teddies frequently so that both teddy’s had our scent on them. When Stephen was cremated he took one teddy with him and I have “Stephen Bear” with me. We also received 2 beautiful purple teddy bears for Amy and Sammy which have the words “Big Sister of an Angel” on their little t-shirts. Teddy bears which they cherish.
Because Stephen was born before 24 weeks’ gestation, because he weighed less than 500g and he showed no signs of life at birth, he is not officially recognised as having been born. He was not entitled to a Stillbirth Certificate and he could not be registered on the Stillbirth register because he did not meet the criteria as laid out in the Stillbirth Act 1994.
I remember when I was in labour, asking the Doctor’s and midwives if my baby would get a stillbirth certificate. They all replied with the same “I’m so sorry but your baby is too small and therefore, no, he will not get a stillbirth certificate”. When I questioned this I was told that that is the way it is, it does not make sense but their hands are tied. This fact caused a great deal of conflict within me. I was about to give birth to a baby that I could hold, kiss, take pictures of, introduce his sisters and family to but in the eyes of our State he is not recognised as being born. Although he was too small to be recognised by the State, he was big enough to be placed in a coffin and be buried or cremated. Amy and Sammy held Stephen, they kissed his forehead, they were so proud to have a little brother. We have beautiful photos of them holding Stephen and beaming with pride.
During my stay in hospital after Stephen’s birth, my uncle messaged me to say he had included Stephen on our family tree. He asked me to think of 7 numbers that meant something to us so that he could put them under Stephen’s name. Stephen was being included just like every other person on our family tree. The only problem with the number is that it means nothing if someone was trying to access his details through the Birth/Deaths and Marriage Register.
As Stephens 2nd anniversary approached the inner conflict grew. I contacted Mairie in Féileacáin and I outlined my frustrations. Mairie too agreed that things needed to change and asked me to draft a proposal with Martin about what we want. Martin and I sat and discussed it and we both agreed that we want a Certificate of Life made available to parents who suffer a miscarriage, after it was medically confirmed, in the first or second trimester, if they so wish. We want an official register whereby parents can choose if they wish to have their babies officially registered. To coincide with this, we believe it is vital that women are entitled to adequate leave to recover from the physical, emotional and mental trauma of losing a baby. No matter what stage of pregnancy that a baby dies, the female body will respond accordingly. My body responded as if I had given birth to a living baby and that was torture.
Currently only parents or appropriate medical personnel can access details of babies that have died in the Stillbirth Register. The register is closed. This too is a cause of undue stress. Why are these details hidden? We are not ashamed of our babies. We want our babies to be seen and traced on family trees.
I sent the proposal to Mairie and it was agreed that Féileacáin would support us with our campaign for a Certificate of Life for Stephen and for all babies like him. 3 years later we are still seeking change. Progress is slow but we will persevere. Martin and I are parents to 4 children. 3 beautiful girls and our 1 eternal butterfly.