Dungarvan's Vicky Wall with Erin O'Hara
An Irish support group has received a Butterfly Award for excelling in providing support to parents who experience tragic baby loss.
The Butterfly Awards is a red carpet annual event which honours survivors of baby loss and celebrates the work of those who support them. It seeks to bring awareness of a topic which is all too often hidden away.
Dungarvan's Vicky Wall of Every Life Counts won the Thank You Award for 2019, given in recognition of the exceptional support she provides to families where a baby is diagnosed with life-limiting conditions. She was honoured and thrilled to accept the award, and hoped it would help to let parents know the support that's available to them. Her own experience losing her baby daughter Líadán made her aware that experiencing a diagnosis of a life-limiting condition is a "terrifying and lonely place" and that so much needs to change.
"Often there's no real support, no wrap-around care, no bereavement counselling, but most of all, there's very little understanding and parents can feel abandoned and broken," she said. "We want to change that. We want to bring the compassion, love and support so that parents feel their babies are valued and their loss is understood."
Erin O'Hara, whose baby girl Freya was diagnosed with anencephaly last year, nominated Vicky for "playing a huge role in our daughter's story." She said: "In December past, I had my beautiful little girl Freya, who sadly passed away in my arms just minutes after she was born. Her daddy and I knew she was going to pass away, but that didn’t make it any easier for us. We found out at our 20 week scan that she had anencephaly, and our lives haven’t been the same since. We have become brand new people, forced to grow up that little bit quicker, into a society which sometimes seems absolutely clueless about baby loss.
"Freya’s journey was an emotional rollercoaster from start to finish, and there were good days, and there were bad days, but no matter what kind of day it was, significant or not, there was one woman who was always there for me - Vicky Wall. Any time I’ve needed someone to talk to, Vicky has been at the other end of the phone, no matter when, no matter why. On the days in which I have doubted myself, Vicky restored my faith in myself. She reassured me that I could do what I set out to do. But most importantly, she prepared me to be able to bring my daughter into this world in a gentle, loving, compassionate way. For that, I will never forget her," she continued.
"Every Life Counts is dedicated to providing desperate families with much needed perinatal hospice care and support. They've not only helped us along the way, but have actually played a huge role in our daughter's story," Erin said.
"I can always count on a message from Every Life Counts, even if it just says 'How are you today darling?' And as much as those messages mean to me, they are little in comparison to the rest of what they have done for us. For instance, in November, my partner and I decided to throw a baby shower, and instead of buying presents, we asked for a small donation for charity from everyone who came. What I couldn’t believe was that the team from Every Life Counts travelled all the way up from Waterford to Northern Ireland (where I live) to attend our special evening. That’s over six hours of travelling. And they brought a professional photographer who took amazing photos and a very special video of my partner and I, talking about the evening and about how our journey had been going so far. Vicky gave me a very special Minnie Mouse teddy bear, which sat in my daughter's Moses basket with her during her time with us. I now have that teddy to treasure for the rest of my life, in memory of her," she explained.
Erin revealed that when she was in hospital around the time of birth, Vicky travelled again to support and advocate for the family. "They made the effort to be there for us, during the best and worst time of our lives," she said.
"It proved how special our little girl was to them, how special all the little babies are to them. Before I was put in touch with Every Life Counts, I didn’t even know what perinatal hospice was, and now I don’t know what I’d have done without it," she said.
Vicky Wall said the best award of all was knowing that her work made such a tragic loss a little more bearable for families. "When my baby died, part of me wanted to go into the grave with her," she said. "It's a harrowing and desperately lonely place to be, and we want to say to parents that we understand and we are here for them, and we'll work to make things better and to bring love and joy while recognising the loss and sorrow.
"This award is for all the beautiful and brave families in Every Life Counts who will always love their babies to the moon and back."