14th October 2022
In support of Baby Loss Awareness Week 2022 (9-15 October) and Wave of Light (15 October), we are delighted to share a Voices blog by Heather O’Sullivan, a mum, who bravely shares her experiences to raise awareness of Baby Loss Awareness Week, the purple butterfly initiative and introduce an online course called ‘Loss of a baby in multiple pregnancy: supporting grieving parents’.
In June 2016, I went into spontaneous, premature labour and gave birth to our twins at 25 weeks and 1 day gestation. They weighed 1lb 7oz and 1lb 12oz. Our Son, Harry, devastatingly died at 11 days old and Grace needed urgent heart surgery whilst fighting for her life. It was (and continues to be) a bittersweet journey. Blessed and happy to have our daughter in our arms, but heartbroken with overwhelming guilt for not having Harry with us too and for putting the Twins and my Husband through so much trauma.
I sat expressing in the early hours in our NICU room in Plymouth, trying to stay awake, I searched online for support. I randomly came across a post from Millie Cann, who had also recently suffered the loss of a twin. I reached out to her and explained how we had just lost Harry and asked how we were meant to cope. We exchanged a couple of messages and she introduced me to The Skye High Foundation and the purple butterfly cot card.
The Skye High Foundation was set up in 2016 in memory of Skye Cann, after Millie and Lewis suffered the loss of their twin girl Skye at 30 weeks due to anencephaly, who lived for 3 hours.
According to Bliss (2022) ‘Babies in a multiple pregnancy are much more likely to experience some level of additional care in a hospital after birth, known as ‘special’ or ‘neonatal’ care’. Millie sat surrounded by Twins in incubators, yet now having just one of her Twins. Millie had to endure some traumatic conversations with both staff and other patients’ families during her stay – . ‘Everything happens for a reason’, ‘You can always have another baby’. When all the babies apart from her surviving Twin, Callie, were crying, a parent said to her ‘I bet you’re glad you don’t have twins’. She fell apart. She was a Twin Mum, but only seen as a Mummy to one baby. From that moment on, she knew things had to change and she created the purple butterfly. Upon releasing the purple butterfly on social media, it went viral, and it gained a great deal of support and publicity and, since then, it has been able to help thousands of families in the UK and around the world.
The purple butterfly cot card was created to be placed into a cot or incubator of a surviving baby or babies, part of a multiple birth, which allows families to write the name of their baby they are remembering, along with posters on the hospital unit, explaining what the purple butterfly symbolises. It allows healthcare professionals and other parents to understand what has happened in neonatal units to avoid unnecessary comments and questions for those families who have experienced the death of a baby, when emotions are particularly high.
We immediately knew we wanted healthcare professionals, families, and friends, to know we were parents to Twins too. Millie sent me a purple butterfly card which was immediately placed on Grace’s incubator, representing Harry, making others aware that our surviving daughter is a Twin and we are parents to Twins.
Millie and I kept in contact, messaging constantly to check how each other were. Finally, someone that could relate to my pain a little more than others.
Meanwhile, Professor Nick Embleton, Consultant Neonatal Paediatrician, had been working closely with Professor Judith Rankin and Dr Ruth Graham, conducting qualitative studies exploring the experiences and feelings of parents and staff around baby loss. These studies led on to work where they spoke with families who had suffered loss in a multiple (twin, triplet) pregnancy where one baby had died either before or after delivery, and where at least one baby had died. They conducted workshops with parents and staff and also developed the idea for ‘the Neonatal Butterfly Project’.
Millie and Professor Embleton soon started working together, with Nick becoming patron of The Skye High Foundation.
Four years later, Millie and Lewis asked me to become involved in their charity. I was honoured to become a trustee, proud to be continuing Harry’s legacy and hoping to support families suffering from loss. My background as a Paediatric Nurse and our personal experience led me to become a Public Health Staff Nurse in the Health Visiting Team. We received such wonderful care from an incredible Health Visitor, I knew I wanted to play that part in someone else’s life too.
The Skye High Foundation and the Neonatal Butterfly Project created our online future learn course called ‘Loss of a baby in multiple pregnancy: supporting grieving parents’. This course is designed for health professionals working with expecting or recently bereaved multiple pregnancy parents in any capacity. Doctors, Midwives, Nurses, Health Visitors, counsellors, and psychologists will all find it valuable. The course is recognised for CPD by the iHV, the RCN and The Royal College of Paediatrics and Child Health and can be found here:
Our aim in the Health Visiting community, is to ensure healthcare professionals know of the Purple Butterfly and exactly what it symbolises. We hope staff will have more bereavement training and families will have access to the Purple Butterfly Cot Card. Soon, we hope to see a Purple Butterfly sticker on the Surviving Twin’s Child Health Record and, eventually, we want to introduce a Purple Butterfly alert symbol on electronic records, for families suffering such devastation. So many people don’t know what to say or how to approach this difficult situation. People are different and have their own ways of coping, but for us at The Skye High Foundation and many suffering from baby loss; ‘if you know someone who has lost a child and you’re afraid to mention them because you think you might make them sad by reminding them that they died, they didn’t forget they died. You’re not reminding them. What you’re reminding them of is that you remember that they lived, and that’s a great, great gift’.
The current project that our team at The Skye High Foundation have been working hard on, has been to update our hospital neonatal packs, which as we speak are being delivered to every Neonatal Unit in the UK, in honour of baby loss awareness week (9-15 October). We have provided each hospital with 15 packed bags, including our purple butterfly cot card, information regarding bereavement support, training leaflets for staff, information about our online bereavement course and a range of items such as stickers, candles, wristbands, teddy bears, purple butterfly badges, pens, and crocheted butterflies to give to those parents who have sadly experienced a loss of a twin, triplet or multiple. We have also delivered some packs to maternity units, and this will form a more specific project next year.
The Skye High Foundation has also partnered with ‘Loss Books’ with the soon-to-be-released ‘The Story of My Purple Butterfly’ twin loss memory book written by Kate Polley.
Fundraising plays a significant role at The Skye High Foundation, and we have achieved a lot already but have so much more to do.
On behalf of all of us at The Skye High Foundation, we feel it is vitally important to raise awareness, especially during baby loss awareness week. Baby Loss Awareness Week is a wonderful opportunity to bring us together as a community and give anyone touched by pregnancy and baby loss a safe and supportive space to share their experiences and feel that they are not alone.
Wave of Light
Baby Loss Awareness Week culminates with the global “Wave of Light” on 15 October, which is also a globally recognised event. We invite you to join other families across the world by lighting a candle at 7pm local time and leaving it burning for at least one hour to remember all babies that have died too soon.
To join our virtual Wave of Light, take a photo of your candle and post it to Facebook, Twitter or Instagram using #WaveOfLight at 7pm local time.
Wherever you do this, you will be joining a global ‘Wave of Light’ in memory of all the babies who lit up our lives.
In Memory of Harry Alexander O’Sullivan