Losing a child is a devastating experience and life will never be the same again. But you are not alone.

Endocardial Fibroelastosis Eadie

“Eadie is a huge part of our lives and she is always with us. I do still feel a physical hole in my heart that will always be there but I have learnt to accept that I can continue living my life without feeling guilty” – Carina, Eadie’s mum.

We have worked with some parents who have been through the loss of a baby to produce this video. We hope that it will offer some vital reassurance for other parents at this traumatic time.

Who can help?

There are a range of organisations which offer further support and guidance to parents following the loss of a baby. These include:

“There will always be triggers – other babies, birthdays, Christmas, Fathers/Mothers Days, Easter, first day at school… and ones you won’t know about, whilst shopping, driving, walking, talking, working….. It can creep up on you without you knowing. The loss of a child is indescribable. So many ‘what ifs’ that never get answered” – Antonio, Matteo’s dad

Supporters’ Stories

Some of our supporters have bravely shared their experiences of baby loss. You can read them here:

Eadie’s Story

Grace’s Story

Danyl’s Story

Oliver’s Story

Double outlet right ventricle oliver

“We’ll continue to spread awareness of CHD for as long as we live and will never forget about Oliver” – Megan, Oliver’s mum.

Levi’s Story

Jessica’s Story


” I often describe grief as being like a stormy sea. The life we had before is like an island – an island I am forever exiled from. The waves take me away from the island and no matter how much I want to return; no matter how hard I try to fight the waves and the storm, I cannot stop drifting further and further away. There have been many, many moments in the last year when the storms have raged around me. Days when I feel like I am drowning in the sea of grief; days when the waves threaten to overwhelm me. Then there are moments when the storm eases, the sea becomes calm and I am able to just drift along. Sometimes I can anticipate the storms, but often they come with little or no warning” – Louise, Jessica’s mum

Louise George writes about life as a bereaved heart family, pregnancy, parenthood, child loss and congenital heart defects on her blog Little Hearts Big Love.

Your Memory Space

If you would like to create an online memory space for your child, you can set up your own special website for free (powered by Much Loved). On your site, you can share memories (photos, music and videos) with your family and friends as well as light candles, celebrate anniversaries, organise events and fundraise in your child’s memory.

Hypoplastic Left Heart Syndrome Danyl

“We are so grateful for the time we got to spend with Danyl. We celebrated things we never thought we would be able to” – Danielle, Danyl’s mum.


“Jessica was such a happy, smiley little girl who brought sunshine to all who knew her. We are so thankful for the time that we were able to have with her, although we will always wish we could have had more” – Louise, Jessica’s mum.