Welcome to Every Life Counts
An outreach for parents
This online outreach is a place where parents of children who were diagnosed with a terminal condition can share their memories, their joy, their pain, and their love. It's a place where the lives of our much-loved children are celebrated, and where we can reach out to parents in similar situations.
Every Life Counts aims to be a valuable resource and source of hope for families and their children who, above all else, seek the gift of time.
Where children are acknowledged
Children who lives are shortened are no less precious than any other child. In fact, many parents say they are the most special children of all.
They deserve to be loved and celebrated - and they are worthy of protection.
"He changed how I mother, and I wouldn't swap that for the world". Clíona, mother to John Paul.
"He is carved in my heart, and that will be there forever." Fiona, mother to Andrew.
"She made me realise what's important. You think you won't cope but you do. She brought us so much love." Aileen, mother to Lilly Ann.
And where support for other families is advocated
Our support and sympathy should also extend to practical, loving assistance for families facing a poor or life-limiting condition.
We're asking everyone to support our Petition to the Minister for Health for better support services for families. The good news is that Perinatal Hospice services can be made available in maternity hospitals with relative ease, and are not costly to maintain. It means that nurses, neonatologists, photographers, bereavement counsellors, and chaplains are available to help families. Most of all it means that parents are given the gift of time with their baby.
What we do
Every Life Counts is a support network for families whose child is diagnosed with a life-limiting condition.
- Provide a forum for parents of children who were diagnosed with a terminal condition to share their memories, their joy, their pain, and their lov
- Seek to establish a support network for parents who have received this devastating diagnosis and want to talk to parents who have been in similar situations
- Provide resources and hope to families and their children who, above all else, seek the gift of time
- Work to ensure that perinatal hospice care to be made available in every maternity unit in Ireland
- Correct the misinformation which is currently causing distress to parents in this situation
- Seek an end to hurtful, medically meaningless and misleading terms such as 'incompatible with life' and "fatal foetal abnormality"
- We hold Little Angel days where families come together and remember their children through poetry, sharing their stories and more.
- We hold Memory Making days where families get together under the guidance of an arts teacher and make mementos for their children and families.
- We hold group counselling sessions for bereaved parents.
- Every Life Counts helps parents tell their testimony and publish it on our website, www.everylifecounts.ie and also makes personal videos for parents who wish to avail of that. These are published on Youtube, our Facebook Page and on the website.
- We run a private forum for the families and introduce new families to this in order for them to make connections and get much needed support and advice at this difficult time.
- We publish information leaflets for support groups and for parents.
- Along with other support groups in this field, we brought together medical experts and families for a conference on the importance of providing perinatal hospice to all parents. This was attended by 140 medical staff.
Irish Child Bereavement Network
Tel: 01 6793223
Anamcara: Supporting parents after bereavement
Irish Sudden Infant Death Association
Tel: 01 8732711
1850 391 391
Now I Lay Me Down to Sleep: Photographers
A free professional photography service especially for families facing the untimely death of their baby. Remembrance photography is a very important step in the healing process. This wonderful service is available for free for Irish families.
www.nowilaymedowntosleep.org - - and for a list of Irish providers - www.feileacain.org/remembering/now-i-lay-me-down-to-sleep-photographers/
Laura Lynn House
The Laura Lynn hospice is the first hospice in Ireland to offer services to children with life-limiting conditions. Parents can avail of support in bringing children home from hospital after birth, medical care at home, and end-of-life care.
Tel: 01 2893151
Set up by parents for parents of Trisomy children, SOFT, the Support Organisation for Trisomy, in Ireland, is a voluntary group dedicated to providing support for families of children born with Patau's Syndrome (Trisomy 13), Edwards' Syndrome (Trisomy 18) and related chromosomal disorders. Support is provided during prenatal diagnosis, during the child's life and after the child's passing.
Tel: 1800 213 218
Féileacáin (Stillbirth and Neonatal Death Association of Ireland – SANDAI) is a non profit organisation that aims to offer support to anyone affected by the death of a baby during pregnancy or shortly after. Féileacáin provide hospitals with memory boxes to be given to bereaved families.
Irish Neonatal Health Alliance
Tel: 085 192 0602
Irish Hospice Maternity Network
Tel: 085 192 0602
International Trisomy Alliance
We are a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes respectively). Our mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate information and resources, and to be a mechanism for sharing between groups.
A wonderful support service for families facing a poor diagnosis for their baby. The perinatal hospice service gives parents the gift of time by offering the best possible medical and professional support to everyone involved, and allowing parents to create precious memories of their time with their special children.
Information about the life-limiting condition, anencephaly, which arises while the child is in the womb. Help is offered for affected parents, caregivers, family and friends.
Be not afraid
Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. There are many inspiring stories of children whose short lives touched so many people.
TAG - Trisomy Advocacy Group
Trisomy Advocacy Group (TAG) is an organization advocating for the Trisomy community by empowering families and the medical community to make informed decisions regarding the care of Trisomy children.
For family and friends
Many people want to help but don't know what to do. These pointers might help you as you support your friend/family member facing their worst nightmare. Thank you for wanting to help. It means a lot to know someone cares.
We will be updating the site constantly with new stories and testimonies. If you would like to send us your story, please send it to us at the address below. Thank you!
353 1 8792382 firstname.lastname@example.org
Dominick Court, 41 Dominick Street Lower, Dublin 1