Our story began in 1994, when we were known as Left Heart Matters. Left Hearts Matter was set up because the isolation fear and lack of understanding parents experienced when their baby had a diagnosis a life-threatening diagnosis of Hypoplastic Left Heart Syndrome. The specialist nurse and local parents were a volunteer team that offered support to families whose children were sent to the only centre treating this complex condition in the UK, Birmingham Children’s Hospital.
Over the following two years, the charity grew, applying for charitable status in 1996 and the first charity Board was created. Other cardiac centres throughout the UK began to offer treatment and the charity’s services expanded to meet the needs of a growing membership. The services included parent-to-parent telephone support, hospital visiting, a book explaining HLHS and yearly Information Open Days.
In 1999 we were awarded a Lottery grant to support the further development of our work. This enabled us to expand the charity to meet the needs of a growing national membership by employing a team of two. We could now offer telephone support, build a regional network service and offer parents information on many aspects of day-to-day life with a child with complex problems. We created a special antenatal support service for the 50% of families who had their diagnosis made during pregnancy. We were also able to build on our reputation throughout the specialist paediatric cardiac service around the UK. Eventually clinicians began to make direct referrals to Left Heart Matters.
As the charity became a recognised service, families of other children with complex disorders sought help from us and medical teams began to request further referrals. We could see there was a much broader need for our support and so we consulted our membership, requesting their thoughts on expanding our remit to include all families where a single ventricle condition had been diagnosed. The membership responded with a resounding ‘yes’, stating that they hoped our services could be available to all.
We officially launched our new role in March 2004, changing our name to Little Hearts Matter and offering support to anyone affected by the diagnosis of a single ventricle heart condition.
Over the following years the charity grew to offer more and more support and information services that included young members as well as their parents. We also started to provide advocacy for members by supporting their disability and education support applications. The charity also developed a reputation for being able to take their members voice into arenas for change, working with the NHS and Government to improve the treatment and support available for anyone travelling the Fontan pathway.
In 2020 the charity started to develop support specifically for adults living with just half a heart. As well as being delighted that our child members were living to adulthood we knew that they were facing challenges as they grew into independent adults.
Today, Little Hearts Matter supports over 5521 parent, grandparents and SVH adult Members, and 1683 child and teenage members. Many families find us at the beginning of their half a heart journey but others join at the different stages of life with half a heart. The staff team has risen to 11 with bespoke Children’s, Young People and Adult services as well as the support for parents from the beginning of the half a heart journey and at every stage beyond.