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As the mother of a small child I remember only to clearly visiting the hospital for my pregnancy scans. I was full of anticipation at being given a picture of my baby that I could take home for all my family to see. Imagine what it must be like to come away from the hospital without a picture but with the knowledge that only half of your baby’s heart is working and that even if the baby has repeated surgery their heart will never be normal and that they may not live into adulthood. As you can imagine those families feel very alone, frightened and confused because not many people have ever heard of single ventricle heart disease, half a working heart.
This is the reality for up to 600 new families each year. Those families go looking for support and information and they find it at Little Hearts Matter. This national charity works with families from the time of diagnosis, through complex surgery into life at home. The charity is with them every step of the way eventually working with the teenagers to help them understand their heart condition and the challenges it creates, trying to help them reach their full potential.
Little Hearts Matter
Little Hearts Matter is the only national charity that offers specialist support to children, and their families, diagnosed as having single ventricle heart disease, only half a working heart.
600 new families face this diagnosis each year with many parents learning that their child will never have a normal heart before their baby is even born. Although the children have repeated high risk surgery they will always have less energy than their friends, find school work tiring, only take a limited part in sports or childhood activities, learn to take medications every day and live in the knowledge that they may well need a heart transplant to have a chance of living into adulthood. New families are left feeling isolated, fearful and lacking a true understanding of what the diagnosis really means.
Little Hearts Matter offers support, information and friendship to families from the day they learn about their child’s heart condition, through treatments and into life at home, ultimately working with the teenagers to help them gain a greater understanding of their heart condition and the lifestyle challenges that it creates empowering them to reach their full potential.
Half a heart...not half a life.
18 years old student from South Wales, Hannah Palmer is one of the oldest people living with the condition of having half a working heart. She was born without her condition being detected, but soon became ill very quickly after her birth.
Having had a series of major heart operations at an early age, Hannah and her family have dealt with some severely stressful and upsetting situations. Having now lived through most of her teenage years with the condition, Hannah has often found it a struggle from feeling isolated. “It was stressful not being able to talk to someone and not having people understand me and why I couldn’t do certain things”.
Samuel was born with Hypo-plastic Left Heart Syndrome. The battle with his heart condition began before he was born, when mum Rachel went for her routine 20 week scan. “To be told that the baby that you’re expecting, has a condition that is incompatible with life was just an absolute bombshell to us”.
At a time when they were confronted with the bleak options of termination, natural mortality or a lifetime of risky operations, Rachel and husband Adrian felt isolated and lonely. Thankfully they were given some information from Little Hearts Matter who provided information and support through such a distressing time.
- Jamelia Davis
- Alex Steinitz
- Executive Producer
- Gill Tierney