Since the day we found out about our daughter’s heart condition, the support and information we have received through various organisations has been invaluable in helping us through our heart family journey. We quickly realised that we were not alone in the journey, that there were others who had travelled it too, as well as those who would travel it after us – and by sharing stories and information, we were able to help each other. Here are some of the organisations and support groups that other heart families may also find helpful.
1) British Heart Foundation
The British Heart Foundation have a huge range of leaflets about various types of congenital heart defects. These were the first pieces of information we were given about our daughter’s heart condition and have been useful for helping explain it to friends and family.
2) Children’s Heart Federation
Children’s Heart Federation run a helpline for heart families and their website is full of information. There are factsheets about various types of CHD, as well as advice and information on living with CHD – from feeding and medicines, to advice for schools and nurseries and even grandparents. Children’s Heart Federation also produce Molly’s Dolly – a rag doll with surgical scars to help explain heart surgery and scarring to young children.
3) Heart Family Group
Heart Family Group is a Facebook support group. It is a friendly, welcoming and supportive community, helping to raise awareness of CHD and helping families to share their stories or ask advice from other heart families.
4) Heartline
Heartline produce the Heart Children handbook for members which is a practical guide for helping parents of heart children. They also provide free wetsuits for heart children as many of them struggle with maintaining their temperature in cold water.
5) Lagan’s Foundation
Lagan’s Foundation is a charity which provides home respite and support for children with heart conditions and feeding issues. Their trained volunteers can provide help and support to families in their homes for a minimum of two hours per week.
6) Little Hearts Matter
Little Hearts Matter is a charity which supports children with single ventricle heart conditions and their families. Their antenatal pack was invaluable during my pregnancy with Jessica, helping us to make sense of her diagnosis and understand the available options and what the future might hold. Nowadays, we find their lifestyle information useful – especially the leaflets on education, exercise and preparing for the Fontan, which is likely to be Jessica’s next surgery.
7) Patches Heart Group
Patches (Parents Association to care for Childrens Hearts Education & Specific needs) is a parent to parent support group for children with congenital or acquired heart defects and their families.
8) The Somerville Foundation
The Somerville Foundation supports young people and adults who were born with CHD, providing lifestyle information and support. Their aim is to help adults and young people with CHD reach their potential through providing information about lifestyle choices and fighting discrimination and isolation. They also provide information to help young people move through the transition from paediatric to adult cardiac services.
9) Tiny Tickers
Tiny Tickers work to raise awareness of CHDs and help improve early detections through sharing parents’ stories, and helping to educate expectant parents about the 20 week anomaly scan and the important questions they should be asking. They also promote the Think HEART campaign to help improve detection of CHDs in those babies who leave hospital with an undiagnosed heart condition.
Great list….I also found Facebook groups run by parents of heart children so supportive and helpful. I don’t know how I would have coped without them x
Thanks Kim – the Facebook groups are great aren’t they? I rarely post in them but I do find it helpful to read other stories and questions.