As one of the longest serving cardiologists at University Hospital of Wales I have had the privilege of working with hundreds of families with children with congenital heart defects, at some of the most difficult times in their life.
My colleagues and I encounter a wide range of heart problems in children. Some are minor, but some are serious and life threatening. In many cases, the more serious problems are diagnosed when the baby is still in the womb, but sometimes a heart problem only becomes apparent after the baby is born.
The Children’s Heart Unit in Cardiff has a team of four paediatric cardiologists and four specialist nurses. We offer a full range of services for day-to-day care, but when an intervention is needed most of our patients are referred to the specialist heart unit at Bristol Children’s Hospital. We know that every family wants the best possible care for their child, ideally without having to travel too far from home, so the impact on the rest of their family is minimised. All the evidence shows that the outcomes for children are better if they receive surgery in a dedicated, specialist centre.
Over my time in Cardiff I have seen this partnership truly grow and flourish. Last year more than 200 children with heart conditions from West, South and Mid Wales were treated in Bristol, accounting for about a third of the workload of the unit. Some of our cases are referred to other specialist units in Birmingham and London.
I can give an example of good partnership working. One of my patients is Harriet. Just before her 11th birthday she collapsed on the walk to school. She had suffered a cardiac arrest and was resuscitated by an off-duty midwife and paramedic. She was transferred from her local hospital to Cardiff where she was stabilised on the paediatric intensive care unit before being transferred to Bristol. While she was there she had special device implanted called an ICD – this type of device will detect life-threatening heart rhythm problems and “shock” it back to normal with an electrical current. Harriet’s heart was functioning so poorly that the Bristol team selected a new type of ICD that does not require leads to be passed into the heart. This was one of the first implants of this type in the UK in a child. Harriet has made a good recovery and has been assessed by the transplant team at Great Ormond Street as “too well” to need a heart transplant at this stage. She remains under the watchful eye of my team in Cardiff and has regular clinic visits in Bristol for her ICD to be checked.
When Welsh patients need more routine treatment, the Cardiff team presents the information at joint clinical meetings. Advances in electronic transfer allow heart images and clinical information to be sent between local hospitals and the specialist centres in Cardiff and Bristol. Every step of the way we are on hand to answer questions and provide advice and guidance to families alongside a strong network of specialist nurses who work across South, Mid and West Wales to ensure parents feel supported wherever they live.
We regularly receive feedback from the families of children treated in Bristol and other specialist units. Happily, the vast majority of the feedback is positive, particularly about the surgery and intensive care treatment. We have been pleased to see new investment in the high dependency “safety net” on the ward after children are discharged from intensive care.
I am very anxious that all young patients with heart conditions receive a high standard of care, whether this is in their local hospital, in a specialist children’s cardiology centre like Cardiff, or in a specialist surgical centre like Bristol. This is why I urge families in Cardiff and the rest of South Wales to make their voices heard on the proposed new standards for all specialist congenital heart units by taking part in NHS England’s national consultation.
Together we can continue to improve the lives of many children and young people with heart conditions.
Dr Dirk Wilson, Consultant Paediatric Cardiologist
University of Wales Hospital, Cardiff