Living the best life with a Single Ventricle Heart Circulation
Thank you for attending and contributing to the LHM Medical Symposium at the end of September. We hope you had a positive day and that you and your team took away ideas of ways to build your Fontan services.
Many delegates have asked to see copies of the talks given on the day. Below you can link to the LHM member films and the PowerPoints presented on the day.
This presentation covers what she has found from her PhD Thesis research in Applied Health to research lived experiences of adult Fontans. Click here to see the presentation
This presentation covers topics like what a single ventricle heart means, Fontan-pathophysiology and AV valve regurgitation. Click here to see the presentation
This presentation covers topics like complications of single ventricle Fontan and clinical pathways development. Click here to see the presentation
This presentation covers what adults with a single ventricle heart condition are affected socially and academically, Factors that increase neurodevelopmental risk and Cognitive outcomes at school age. Click here to see the presentation
This presentation covers topics like why exercise is important for patients with a single ventricle heart and a summary of the main effects of regular physical activity (PA) and exercise on cardiovascular disease (CVD). Click here to see the presentation
This presentation covers topics like Pregnancy and Family Planning, concerns over sex and intimacy for patients with single ventricle heart conditions. Click here to see the presentation
This presentation covers topics like the various types of transitions patients with a single ventricle heart condition go through as they transition from paediatric to adult hospitals and Transition and Transfer for inpatient care. Click here to see the presentation
This presentation covers topics like the results from the DLA and PIP survey, providing medical evidence and how they are beneficial for single ventricle heart patients. Click here to see the presentation
This presentation covers the what Paediatric Palliative Care is about, why it matters and who should have PPC input. Click here to see the presentation
This presentation covers topics like Fontan failure management, the pathway to transplant and the real barriers to transplant. Click here to see the presentation
This presentation covers topics like characteristics of the Fontan, characteristics of the failing Fontan and a routine Fontan surveillance disorder. Click here to see the presentation
This presentation covers topics like the priority questions suitable for a
registry, risks of certain outcomes and the role of future registries. Click here to see the presentation
This presentation covers topics like Congenital Heart Research Network, Single ventricle research and the Congenital Heart Research Network. Click here to see the presentation
Dr. David Crossland is a Consultant Paediatric and Adult Congenital Cardiologist at Freeman Hospital, Newcastle upon Tyne.
David is the clinical director for Newcastle’s paediatric and adult congenital heart disease service. His training in congenital cardiology was at the Freeman Hospital with a year’s sabbatical in Melbourne Children’s Hospital (paediatric, cardiology….. surfing). He was appointed as consultant in 2008 with the majority of his work in the catheter lab.
David also has a major interest in the assessment of adults and children with congenital heart disease for heart transplant as well as alternative conventional surgery and mechanical support.
David has been active in trying to ensure that there is adequate provision for services for congenital heart disease patients with heart failure and has previously negotiated a change in the urgent heart transplant listing criteria for adults with congenital heart disease to allow more equitable access to donor organs for single ventricle patients.
David says he is proud to be a LHM medical advisor
Dr Paul Clift is an experienced Cardiologist specialising in congenital heart disease and aortopathy. Paul has over 20 years’ experience in managing complex congenital heart disease and has specialist interests in the impact of pulmonary vascular disease on congenital heart disease, the single ventricle circulation and genomic medicine in congenital heart disease.
Paul has published in all these areas and has lectured at numerous national and international meetings. He is a clinical trialist, focussing recently on clinical research in the Fontan circulation. He holds the position of Honorary Clinical Senior Lecturer at the University of Birmingham, Institute of Cardiovascular Sciences
Paul is a NIHR CRN National Speciality Lead for Cardiovascular, chairs the Expert Working Group for Cardiovascular with the ‘National Case Mix Team’, and is the Clinical Lead for the Centre for Rare Diseases at Queen Elizabeth Hospital in Birmingham. Birmingham has a proud record in research and clinical services for patients with Rare Diseases, and has an integrated service within Birmingham Health Partners, supporting all ages of patients and delivering clinical and translational research.
Paul is one of Little Hearts Matter’s medical advisors
Dr Kerry Gaskin is a Professor of Congenital Cardiac Nursing at Birmingham City University, the role reflects NHS and academic collaboration, leading and developing congenital cardiac nursing research and implementation of evidence-based practice across all children’s cardiac networks.
The aim of her role is to work collaboratively with other key nursing post-holders, such as lead nurses, nurse consultants, advanced practitioners, and clinical educators to produce high quality research outputs. Additionally, the professorial aim is to contribute not only to the academic development of staff and students, but also the development of a dedicated nursing research focused infrastructure within the NHS.
A Registered Children’s Nurse and Adult Nurse, Kerry worked in Children’s Cardiac Intensive Care, Paediatric Intensive Care and High Dependency Care at several specialist Children’s Cardiac Units and Children’s Hospitals in the UK before moving into academia in 2005.
Kerry’s research focuses on parental experiences and home assessment using an early warning tool called the Congenital Heart Assessment Tool (CHAT), to enable parents to identify signs of deterioration in their infant and to make prompt contact with the appropriate health care professional.
Suzie Hutchinson has been involved in the treatment, care and advocacy of children and adults with complex congenital heart disease for over thirty-eight years.
Originally as a registered adult and children’s nurse, a pioneering liaison/specialist nurse (she was the third to hold the role in the UK) and then as the charity lead at Little Hearts Matter.
Her current role is Head of Services specialising in the support of parents traveling the single ventricle heart journey, from antenatal diagnosis to their child’s adulthood. A specific area of expertise is advocating for LHM members in arenas for change, NHS and Government. Her current focus is improving access to disability benefits and the reduction of inequalities in access to education.
Suzie has published condition, treatment and lifestyle booklets, specifically written for patients and their families, relating to the half a heart journey, and contributed to many research and clinical studies relating to the treatment and care of patients on the Fontan pathway.
In 2023 Suzie was awarded an MBE for her work supporting and advocating for the needs of patients with congenital heart disease.
Lexie Katsaitis has been head of youth services at Little Hearts Matter for almost seven years.
With a background in youth services and support her role at Little Hearts Matter is to encourage, empower and support young people, age 12 to 18, living with half a working heart to reach their full potential.
Lexie has published lifestyle specific booklets for young people with a single ventricle heart and contributed to and supported the facilitation of cardiac research studies with adolescents and young people.
Lexie’s special areas of interest are hospital transition/transfer working with young people and units across the UK to facilitate and improve transition services and the Energy Project, an LHM ran project to support young people as they understand, manage and explain their limited energy levels.
Lexie has created the ‘CYWG’ a congenital cardiac youth team forum, bringing together specialist youth workers from networks and charities around the UK.
Speakers
Jara Weinkauf was born with Tricuspid Valve Atresia in 1986 and grew up in Germany. She has had her Fontan surgery at 4 years old.
Since then, Jara has studied and worked in many other countries such as the U.S. and U.K.
Following her latest open heart surgery in 2015 Jara has launched a blog ‘Optimistic Heart’ in which she advocates for an active and fun filled life despite having a congenital heart defect and shares her experiences of living with only half a functioning heart.
Currently Jara is working fulltime as Executive Assistant at an investment firm in London and is doing a Ph.D. at the University of Birmingham to study the everyday life of adult Fontan patients.
Dr Helen Parry arrived in Leeds to complete her training in congenital heart disease in 2016 and completed her training 2 years later.
Helen did a hybrid post-CCT fellowship in congenital cardiac echo and locum consultant post for 1 year before being appointed as a substantive consultant.
Helen currently works between Leeds General Infirmary and Northern General Hospital in Sheffield (weekly outreach clinics).
Helen’s main interests are echocardiography in congenital heart disease including TTE, TOE and ICE, and education and training in Adult Congenital Cardiology
Dr Louise Coats is an adult congenital cardiologist at the Freeman Hospital, Newcastle upon Tyne and an honorary senior clinical lecturer at Newcastle University.
Louise is interested in novel patient-centred approaches to surveillance and ambulatory care in ACHD, with particular focus on arrhythmia, heart failure and those living with complex conditions.
She is funded by NIHR through a senior clinical and research practitioner award.
Louise is ACHD lead for the Northeast and North Cumbria CHD network, ACHD training lead in Northern Deanery and BCCA council member.
Dr Michele Puckey has worked in NHS paediatric health care services throughout her career. Her passion is clinical work with children, their families and NHS teams.
Michele has held her current post as consultant paediatric clinical psychologist at Royal Brompton Hospital for many years.
Special interests include talking with children, (patient or other siblings etc), about their health condition, adherence to treatment, breaking significant news, supporting families, neurodiversity, trauma, loss, and bereavement.
Michele tries to practice in a way that always holds intersectionality in mind supporting equitable but, if required, bespoke access to services for all patients, their families and carers.
Greatest achievements
Dr Jo Wray is a senior research fellow and health psychologist at Great Ormond Street Hospital for Children in London and Professor of Child Health Psychology at the Institute of Cardiovascular Science, UCL.
Having set up a clinical and research programme with patients undergoing cardiac surgery or cardiothoracic transplantation at Harefield Hospital in 1988, she subsequently moved to Great Ormond Street in 2008.
Jo’s current research focuses on patient and family outcomes and experience in the field of paediatric critical care and cardiorespiratory medicine, approaches to screening and early intervention to improve developmental and psychological outcomes, and longer term experiences of care of adults with congenital heart disease.
As an interdisciplinary researcher she is particularly interested in engagement and using innovative, creative and technological approaches to facilitate communication about health, both with those affected by specific conditions and/or treatments and the wider public.
Prof Graham Stuart is Honorary Consultant Cardiologist (Congenital and Inherited Heart Disease) at the Bristol Royal Hospital for Children and the Bristol Heart Institute. After training in Dundee, Glasgow, Birmingham, Newcastle and Cardiff, he was appointed as Consultant Cardiologist at the University Hospital of Wales in 1993 and moved to Bristol in 1998. He is Honorary Associate Professor in Sports and Exercise Cardiology at the University of Bristol.
Graham has a clinical and research interest in cardiac arrhythmias and effect of exercise on the heart. He is on the Medical Advisory group of the Noonan Association and Marfan Trust and is advisor to SADS UK.
Graham has helped NHS England draft national policy on management of inherited and congenital cardiac conditions in children and adults and is a member of the NHS England ICC Service Specification review group and the BHF/NHS England Sudden Death Project Steering group. Graham has been Principle Investigator/co-investigator of a number of research studies looking at exercise prescription, exercise physiology and various aspects of inherited cardiac conditions and has published over 250 peer reviewed research papers with over 6000 citations.
In 2014, Graham completed an MSc in Sports and Exercise Medicine (University of Exeter) and in 2017 a Certificate in Genomic Medicine at Imperial College, London. Until 2023, Graham was Medical Director of Sports Cardiology UK – a company specialising in the management of athletes with heart disease. Graham is semiretired and is currently studying for a Masters degree in Theology at Spurgeons College, London. He is an enthusiastic (but not very talented !) endurance athlete and in 2022 he rowed across the Atlantic in 41 days.
In recent years he has experienced his own arrhythmia issues and has undergone both ablation of an arrhythmia and implantation of a pacemaker and defibrillator.
Hajar Habibi is the lead clinical nurse specialist for the Adult Congenital Heart Disease (ACHD) service at Royal Brompton Hospital. With over two decades of experience, Hajar has consistently demonstrated a commitment to high-quality patient care, advancing the field through research, education, and numerous national and international publications.
Hajar’s work addresses not only the physical aspects of congenital heart disease but also the emotional and psychological needs of patients and their families.
Beyond her direct patient care, Hajar excels in educating and mentoring other healthcare professionals, playing a crucial role in shaping the next generation of CHD specialists. Renowned for her strong advocacy for CHD patients, Hajar has been pivotal in raising awareness of the unique challenges they face. Her active involvement in patient support groups underscores her dedication to improving the lives of those affected by congenital heart disease.
Dr Kate Renton is a Consultant in Specialist Paediatric Palliative Medicine at University Hospital Southampton and Naomi House & Jacksplace Hospices for children and young adults. She is involved in supporting patients with life-limiting or life-threatening conditions who require specialist palliative care input across Wessex.
She supports patients, families and professionals in decision making and care planning with a focus on improving quality of life. She helps in management of distressing symptoms, signposting to respite care and other services, and support with end of life care through to bereavement.
Kate works closely with the cardiac team in Southampton. Together with fetal medicine and cardiac colleagues the team have developed an antenatal care pathway for patients with hypoplastic left heart, and other complex cardiac conditions. The hope is that meeting families earlier will reduce the anxiety associated with meeting the paediatric palliative care team for the first time, and thus improve holistic care.
Mr Nigel Drury is an Academic Consultant in Paediatric Cardiac Surgery at Birmingham Children’s Hospital and Associate Clinical Professor at the University of Birmingham. His main research interests are improving outcomes of surgery for congenital heart disease, clinical trials, myocardial protection, and patient & public involvement in research.
Nigel led the James Lind Alliance Priority Setting Partnership on Congenital Heart Disease in 2021/22 to establish national priorities for clinical research, and is setting up the Congenital Heart Research Network in the UK and Ireland to address the priorities through collaborative research, especially multi-centre clinical trials.
Nigel is Chief Investigator on two BHF-funded multi-centre clinical trials in children and was previously awarded a BHF Intermediate Clinical Research Fellowship and a prestigious Hunterian Professorship from the Royal College of Surgeons of England. He is Jara’s co-supervisor on her PhD on quality of life in adults living with a Fontan circulation.
is an Academic Consultant in Paediatric Cardiac Surgery at Birmingham Children’s Hospital and Associate Clinical Professor at the University of Birmingham. His main research interests are improving outcomes of surgery for congenital heart disease, clinical trials, myocardial protection, and patient & public involvement in research.
Nigel led the James Lind Alliance Priority Setting Partnership on Congenital Heart Disease in 2021/22 to establish national priorities for clinical research, and is setting up the Congenital Heart Research Network in the UK and Ireland to address the priorities through collaborative research, especially multi-centre clinical trials.
Nigel is Chief Investigator on two BHF-funded multi-centre clinical trials in children and was previously awarded a BHF Intermediate Clinical Research Fellowship and a prestigious Hunterian Professorship from the Royal College of Surgeons of England. He is Jara’s co-supervisor on her PhD on quality of life in adults living with a Fontan circulation.
Dillon Morley I’m 20 years old and I have hypoplastic left heart syndrome.
My job involves complex machine engineering at Safran landing systems, I love the intricate details and problem solving this involves in order to create and build landing gear for aircraft.
In terms of hobbies I love playing golf, I’ve even taken up professional lessons. Additionally I love to travel, I’ve travelled many countries around the world as far as America and Australia and I hope to do more in the future!
Alongside me in the video is my partner Abi. Abi is currently studying to become a primary school teacher but in her spare time will support me in creating as many memories as we can together. Abi and I met each other through secondary school and are now coming up to our 3 and half year anniversary.
Colbie-Kate Ross I am 22 and I have complex pulmonary atresia with an isomerism. I have had four operations with my last one being in 2008. I recently had a cath to investigate my symptoms, followed by a stress echo which discovered my leaky valve worsens on exercise. This is being medicated as it cannot be operated on.
Aside from this, I have just recently graduated university and started teaching. I am absolutely loving it even though it has a big impact on my energy levels. I am attempting to complete this year at full time, however I know that from next year I will probably have to drop down to part time.
My aspiration for the future is to just live my life as normally as possible. I want to be able to do things any other adult can do. I want to be able to travel the world, get married and start a family whilst being as healthy as possible.
Andrew Kerry I was born in 1995 with Hypoplastic Left Heart Syndrome. I have had all 3 stages of the Norwood procedure with my Fontan completed when I was 4 years old. My heart function has remained relatively stable throughout my life but I’ve been badly affected by arrhythmias resulting in more cardioversions and ablations than I can keep count of! Despite having low energy levels, I do my best to live a relatively normal life working 4 days a week from home as a motion graphic designer. In 2020, I got married to my wonderful wife Robyn and we now live together in our home in Bedfordshire. The future remains very much uncertain which takes its toll on my mental health, but with a great support network I do my best to face the future with optimism.
