Losing a child is a devastating experience and life will never be the same again. Please accept our heartfelt condolences for your loss. Please also know that you are not alone; Tiny Tickers, our community of supporters, fellow bereaved parents and many other organisations, are here to support you.

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.

Bereaved heart parents support group

Our Facebook support group for bereaved heart parents is a safe and confidential space for parents and carers who have lost a child to congenital heart disease (CHD). Bereaved parents can connect, share their experiences of losing a child, celebrate their child’s life and support each other.

We welcome all bereaved heart parents to join this supportive community.

Family experiences

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 bereaved 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 heart parents have bravely shared their experiences of baby and child loss. You can read them here:

Eadie’s Story

Grace’s Story

Danyl’s Story

Oliver’s Story

Levi’s Story

Millie’s Story

Jessica’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.


“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.

Forever In Out Hearts tribute pages

Many bereaved parents find comfort in creating an online tribute page after losing a child. This space, like an online memory box, can be filled with memories (photos, music and videos) and shared with family and friends. You can also share funeral details, light candles, write messages and give gifts. It is also possible to use this page to fundraise in memory of your child, but this is by no means obligatory.

Read more about Forever In Our Hearts tribute pages here.

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.