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Plea:

All parents with heart-children know the terrible shock of diagnosis, the fear of an uncertain future for precious children, the utter terror of leaving them in the anaesthetic room before heart surgery and the sheer joy when they return, in most cases pinker and healthier (for the time being anyway).

For a very few parents the nightmare is only beginning, and tragically their babies or children lose their brave fight for life.
Whilst it is rare for children with heart conditions to pass away, when it happens it is life changing for the families.

ECHO provides comprehensive support for children with heart conditions and their families who have been treated by the Evelina London Children’s Hospital and hospitals across its networks. Our members often travel from across the UK for specialist cardiac treatment, we have members from across the UK including Ireland, wales and Scotland.

We help from the point of diagnosis, which is often during pregnancy, through to the child’s teenage years and beyond, including bereavement support for parents and siblings when needed.

9 out of every 1000 babies born in the UK has a heart condition and over 6,000 children attend the hospital for cardiac care each year.

After the loss of a child we know that many parents feel isolated from friends and family, and also from the support structures and groups (like ECHO) that had helped them before their child’s death.

In the past our support to bereaved parents could at times seem unclear, parents spoke to us and told us it felt as though they had not only lost their child but also the support and opportunities that ECHO provide, so over the past two years we have developed our united in grief support to ensure bereaved parents can access our service if they want to.

ECHO, like many other support groups, recognises the importance of making sure that bereaved parents are not abandoned at such a tragic time and that appropriate care and support is made available to them.

Our united in grief (UIG) programme includes:
(UIG) Community Day
Parents might attend alone or as a couple, they will be able to meet others who have faced similar heartbreak. Many have found that meeting people who have faced bereavement through cardiac issues can make a huge difference in helping them cope both now and moving forward. There is an informal lunch, an opportunity to meet the ECHO team and others who have attended and also provide some structured discussion groups and activities.
(UIG) Bereavement Workshops
For any parent or carer who has experienced the death a child diagnosed with a Heart Condition who received treatment or care by the team at the Evelina London Children’s Hospital or the network hospitals. The workshops are facilitated by Debbie Howe, a qualified and experienced councillor, and supported by members of the ECHO team, they run for six weeks and give the opportunity to explore grief as a group.

Losing a son or daughter at any age is one of the most heart breaking events a parent can ever face. Whether this has happened recently or some time ago we invite parents who have lost a child with a heart condition to join us at our United in Grief – UIG Events.

Over the next year we plan to establish a reflection area within the grounds of a London venue so parents, siblings and families can have a place to visit throughout the year.

When considering children with heart conditions throughout the UK, many people feel deep sorrow but do not know how to help.

Your vote could give families who have joined the heart community but lost their child the opportunity to know we are there for them, if they need us. It will also raise awareness of children’s heart related deaths and allow people to understand a little more about this common yet still unknown condition

ECHO:
Mission: To support the children affected by heart disease & treated by the Evelina London Children’s Hospital networks and their families.
Vision: A world where the emotional, social, financial and medical needs of heart families are met
Values: Resilient, Empowering, Supportive, Open and Honest, Resourceful & Impactful

Thank you for your time and vote.

What others have said:

The Evelina Children’s Heart Organisation is a charitable organisation that support families through pregnancy, birth and childhood where a child is diagnosed with congenital heart defects. ECHO also work closely with their members to ensure everyone is supported in every way. That includes keeping family close to their babies while in hospital. My wife and I would not have been able to survive the 6 weeks in hospital without this, due to our rainbows hospital stay.