You have received a poor diagnosis

Dear Parents, 

If you find yourself reading this, you or someone you love has found that the joyful anticipation of the birth of a baby has turned into a time of confusion and heartbreak. We are here to let you know you are not alone.

Every Life Counts was created out of a need to support families who find themselves in a situation where their baby may not live for long after birth. We know our parents have walked this road, and there were days they said they felt so alone. Our desire is that families can have a place where they can feel supported and loved as they walk on this journey of saying hello and goodbye to their beautiful baby.

We want to support you on this most difficult journey. We can offer you practical guidance and compassion as you make plans to honour your baby’s precious life. We want to help calm the confusion and offer hope for the journey.

Thank you for visiting Every Life Counts website. 

     

Contact us

If you, or someone you know, is facing a poor prenatal diagnosis, reaching out for help is the first, and often the hardest, step. Every Life Counts will ensure you will not be alone as you carry your baby.

     

Our Promise

Every Life Counts was created to provide a nurturing and safe place for families as they navigate the path following a poor prenatal diagnosis that will result in a short life of their baby prior to, or shortly after birth.

The path between grief and hope is a difficult place to walk; our promise is to provide guidance, compassion and practical suggestions to help you and your family through this time.

We’d like to help you create special memories with your baby and to know that each life has a story worth telling.


    

How to contact us

You can email us vicky@everylifecounts.ie

Call us on 01 8792382

If you want to leave a message and we promise to call you back within 24 hours

     

What we can do to help

We’ll send you a pack with information on your baby’s diagnosis and advise you how to get the help you need,

  • If you’d like to talk, we’ll put you in touch with a parent who has also been in this situation
  • We can help you create a birth plan, and offering suggestions in creating a birth plan that will express your wishes for your care as well as your baby.
  • We provide anticipatory grief support.
  • We can give referrals to community resources, where available.
  • Help you create a memorial page as a lasting memento to your child and for your family

     

Listen to one of our mums talk about her pregnancy and birth of her daughter.

 


     

Support services

 

Irish Child Bereavement Network

Tel: 01 6793223

http://www.childhoodbereavement.ie

Anamcara: Supporting parents after bereavement

Email: info@anamcara.ie

http://www.anamcara.ie

Irish Sudden Infant Death Association

Tel: 01 8732711

1850 391 391

http://www.isida.ie

 

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

http://www.lauralynn.ie

SOFT Ireland

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

http://www.softireland.com

 

Féileacáin

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.

www.feileacain.ie

 

Irish Neonatal Health Alliance

Tel: 085 192 0602

http://www.inha.ie/

 

Irish Hospice Maternity Network

Tel: 085 192 0602

http://hospicefoundation.ie/healthcare-programmes/hospice-friendly-hospitals/hfh-networks/maternity-network/

 

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.

www.internationaltrisomyalliance.com/

 

Perinatal Hospice

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.

www.perinatalhospice.org

  

Anencephaly.info

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.
www.anencephalie-info.org

 

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.
www.benotafraid.net

 

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.
www.trisomyhelp.org

 

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.