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.
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.
“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:
- Child Bereavement UK run a free Helpline on 0800 02 888 40. They have support groups for bereaved parents, offer counselling and they can help siblings through a bereavement.
- Bliss has a range of information on their website, and a booklet on overcoming loss.
- Saying Goodbye offers support, advice and a befriending service. You can also attend Saying Goodbye ceremonies across the country.
- SANDS works throughout the UK to support anyone affected by the death of a baby and strives to improve the care bereaved parents receive. You can call their free helpline on 0808 164 3332 or visit their website to find out about their local support groups and online community.
- Held in our Hearts – an Edinburgh based providing baby loss counselling and support to families, with over 40 years’ experience of offering compassionate bereavement care in the community.
- The Lullaby Trust also offers support to bereaved families, through their free helpline on 0808 802 6868, online forums and befriender support network.
- The Compassionate Friends is another charity working to support bereaved families, via their helpline 0345 123 2304. Their website contains many useful resources for families coping with the loss of a baby.
- Grief Chat is a free service, allowing you to chat online with a qualified and professional bereavement counsellor, Monday – Friday 9am – 9pm (GMT).
- Petals – The Baby Loss Counselling Charity provides specialist counselling after baby loss.
- Antenatal Results & Choices (ARC) is a national charity providing support to individuals bereaved following the loss of a baby as a result of a prenatal diagnosis.
“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:
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Harrison’s Story
Harrison tragically passed away from an undetected heart defect when he was 32 days old. His mum, Katie, shares their story:
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AJ’s Story
AJ tragically passed away after open heart surgery when he was one-year old. His devastated mum, Lorraine, bravely shares their story:
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Ayla’s Story
When Ayla was born, no-one knew she had a serious heart defect. Soon after birth, she was diagnosed with total anomalous pulmonary venous drainage (TAPVD) …read more
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Joseph’s Story
Joseph’s heart condition wasn’t diagnosed until he was one month old and he tragically passed away after his second open heart surgery. His devastated mum, …read more
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Dominic’s Story
Dominic was born with half a working heart. After an incredibly brave fight, he tragically passed away when he was one week old. His devastated …read more
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Ella’s Story
Ella tragically passed away when she was three and a half months old. Her heart-broken parents, Leah and Joe, share their brave daughter’s story:
“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
“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
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