The Mission and Work of Every Life Counts – Vicky Wall

Who We Are
Every Life Counts provides parents who have received a life-limiting diagnosis for their unborn baby with the vital support they need to let love shine through. We were created in 2014, out of a need to help families who find themselves in a situation where their baby may not live for long after birth. We offer families a network where they can feel supported, loved and informed, as they say hello and goodbye to their beautiful baby.

At the darkest point in my life, Every Life Counts enabled me to see the light by helping me come to terms with the lifelimiting diagnosis of my daughter Freya, who had anencephaly. Because of that I was able to love and care for her just the way I should have. Freya and I will be forever grateful for the support we have received from Every Life Counts, and more importantly for the forever-friends we have made on our journey together. ERIN O’HARA, MUM TO FREYA

Because we have walked this journey ourselves, we know how frightening and alone parents can feel. We also learned what parents most need. Our main focus is to provide support – especially in the form of a peer-to-peer support network where families can be talk and meet with other parents who have been given the same diagnosis for their baby. Mums and Dads say this is invaluable and critically important in enabling parents to find the strength to make the most of their time with baby, before and after birth.

Sometimes families need to talk and share, sometimes they need help getting counselling, sometimes Mum is on her own and needs someone to go to hospital to be a support for appointments, or after baby is born. We can give referrals to community resources, where available. We help The Mission and Work of Every Life Counts parents create a birth plan, offering suggestions from experience that will help Mum and Dad express their wishes for care for both mother and baby. We also provide anticipatory grief support, since loss and grief are an inescapable part of this journey.

We send out care packages to Mum before the birth of her baby. Each care package is unique to Mum, and the memory boxes, tiny booties and more, are packed with love for both Mum and baby. Our medically accurate and beautifully presented booklets help to inform and reassure parents who were all too often simply told to ‘go home and google’ for information after their baby was diagnosed.

Every Life Counts also provides a website forum for parents of children who were diagnosed with a terminal condition, to share their memories, their joy, their pain, and their love. Parents says that sharing their stories through individual, personalised web pages, means they feel their baby’s life was valued and recognised, and they also feel they are helping others who may be in the same position.

If it wasn’t for ELC I would have been lost, they were essential to my healing. I am truly grateful for their help and support on this hard and lonely journey. GEMMA COILEY, MUM TO BRENDAN, WHO HAD POTTER’S SYNDROME

When I lost my baby boy Troy, back in January 2019, Vicky from ELC reached out to me. She gave me great advice, she comforted me and still to this day contacts me to see how I’m doing. This is what any bereaved parent needs: ‘someone to talk to,’ and ELC is perfect for this. They have been there for me every step of the way. Thank you. LAUREN KAY-MCDOWELL

Work with Health Services
We work with healthcare providers, acting as a liaison and a conduit between parents and medical and healthcare professionals, to ensure the experiences of parents are shared and co-operation is achieved with the aim of improving services for families. Every Life Counts has been pleased to work with the Irish national health service to improve bereavement care, and we continue to participate in consultations to ensure parents and babies are supported and valued. This can be a heart-breaking time for parents, and medics want to know how to best help families. Together, we can make the pain easier to bear, and ensure families have time to love and make memories.

For the first Perinatal Care conference in Dublin in 2016, we hosted some of the world’s leading experts in caring for very sick babies and their families, and we are planning a similar event in 2020. Attended by doctors, nurses and midwives, the conference heard from experts in perinatal hospice care, the management and treatment of complex conditions for baby, including surgery for baby in the womb, and best care when dealing with loss. The conference also heard from families who had lost their babies to these conditions, a shared experience that all attendees greatly valued. We also produce fully-researched, accurate and crucially important information in booklet form, and on our website. We have provided maternity hospitals with these booklets, and the feedback from staff in the hospitals has very positive.

I wish to extend my sincere gratitude for all the wonderful information that you sent. We will be eternally grateful for all your support. The Maternity Bereavement study day was a huge success and very positively received. END OF LIFE CARE COORDINATOR, SLIGO HOSPITAL.

Provide Information and Increase Awareness Every Life Counts works with mainstream and social media to increase awareness about life-limiting conditions, such as anencephaly and Trisomy 18. Our videos sharing the experiences of parents have received millions of views and have helped many families to feel their baby’s life was valued and recognised. ELC have appeared on many national and local TV and radio programmes and our families’ stories have been widely published and shared. Our mission in regard to increasing awareness is to ensure that more and more people understand the needs of our families and that they also understand that our babies are precious and loved, and that every life counts.

Hi. I saw your beautiful video on Every Life Counts. I would just like to say thank-you. I am 28 weeks pregnant with a little boy who was diagnosed with Trisomy 18, and this was the best thing I could have seen right now. SÍOFRA

Vicky from ELC rang me after I contacted her after I got my son’s anencephaly diagnosis. I couldn’t speak with the lump in my throat! But she knew that anyway, so I didn’t have to say a word. She made me feel a little more relaxed & after everything happened, I understood. She kept in touch & was there when I needed her… and 9 months on she is still there. I got the most beautiful locket for Rossa’s memory – totally unexpected but truly appreciated. ELC does an amazing job for us parents facing the biggest struggle of their lives. I’ve made a friend who I feel I can talk to about anything (even though we have never met). I don’t know where I would be without ELC. True angels do exist on this earth. Thank you, Every Life Counts. If anyone deserves an award for their hard work & emotional presence it’s ELC. Just amazing! Xx. ROSE FOLEY, MUM TO BABY ROSSA

Vicky Wall, founder of Every Life Counts.

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