‘Living the best life with a Single Ventricle Heart Circulation’

Medical Symposium: Monday 30 September, Birmingham

As we mark World Heart Day, over 100 medics, specialists, doctors, nurses, psychologists and young people living with a half a functioning heart, will come together for a national event to discuss the medical and lifestyle challenges for children and young adults who have undergone the most complex heart surgery that exists.

This event marks World Heart Day and the 30^th anniversary of the Birmingham-based children’s heart charity Little Hearts Matter.  The charity was founded by parents and medics at Birmingham Children’s Hospital who saw the urgent need to support others going through this complex open-heart surgery.

At the time, the heart surgery was seen as pioneering.  Today, despite the daily challenges they face, this new cohort of ‘heart babies’ are trailblazers for their generation and have the drive and ambition to live their lives to their full potential.

‘Living the best life with a Single Ventricle Heart Circulation’ will look to the future and work in collaboration with medical teams to improve the outcomes and aspirations of anyone living with half a working heart.  The lived experiences of people living with half a heart will feature throughout the day.  Discussion topics will look at all aspects of the half a heart experience and will focus on ‘how do we measure success beyond survival’.

Speaking at the conference about her experiences of living with half a functioning heart, Colbie-Kate Ross, 22yrs from Eyemouth in Scotland, says:

“This event is a critical next step to improve pathways and services for people like myself living with a single ventricle heart. It’s incredibly important that people with a single ventricle heart have the correct support in place in order to maximise their quality of life. It was important to me to be a part of the conference and share the realities of living with such a serious condition. This journey can be incredibly difficult so advocating for ourselves – and others with similar conditions – is vital.”

Dillon Morley, 20yrs, from Cheltenham, lives with half a functioning heart.   He has shared his experiences to raise awareness to help others in a similar situation.  He says; “I feel so honoured to have had the opportunity to have my voice heard. My hope is that through my engagement with this I can support the future generation in making sure they have better experiences than I have had.”

Dr Paul Clift, Consultant Cardiologist, Queen Elizabeth Hospital, Birmingham who has seen young people transition into adult heart services, said:

“Over many  years, I’ve seen the huge impact Little Hearts Matter has had on young people.  It’s a truly unique charity that’s with those affected by single ventricle heart conditions every step of the way.  These young people are trailblazers and show the impact of medical advances.  We now need to ensure support systems are put in place so they can live life to their full potential.”

Suzie Hutchinson, Head of Services, Little Hearts Matter, says:

“This symposium is a landmark moment for Little Hearts Matter as we mark thirty years and look ahead to the future of people affected by half a working heart.   Single ventricle heart conditions are often ‘invisible’ and many young people struggle to get the support they need.  Little Hearts Matter is passionate about supporting and empowering anyone affected.”