Award for pioneering work that benefits children with heart conditions
14 February 2024
Children across Wales with a heart condition called Supraventricular Tachycardia (SVT) are benefitting from pioneering work by clinicians in the Children’s Heart Unit and Paediatric Consultants in South Wales Paediatric Cardiovascular Network as well as patients and their families. It has led to the University Hospital of Wales being recognised as a Centre of Excellence.
The driving force for change
During the COVID-19 pandemic the Children’s Heart Unit faced a significant challenge.
In order to diagnose and safely medicate types of tachycardia, where a child’s heart beats significantly faster than normal, their heart rhythm has to be monitored over a period of time.
Having episodes of tachycardia can cause various symptoms and be very distressing for children and their parents. If left untreated it can lead to serious health risks so the arrhythmia monitoring is crucial.
Traditionally the Children’s Heart Unit lent out Holter ECG devices for up to 14 days. With electrodes stuck to a child’s chest, the bulky equipment would monitor heart activity and then be returned for analysis. However, during lockdown, it was impossible to get the devices to the children and back to the hospital, especially as the unit provides cardiac services for children across Wales.
Finding an innovative solution
Professor Orhan Uzun, Consultant Paediatric Cardiologist at Cardiff and Vale University Health Board, began working with his patients’ families (Welsh Heart Families) and the wider team consisting of Paediatric Cardiac Specialist Nurses, Paediatricians with an interest in Cardiology in District General Hospitals, and Children’s Wales Air Ambulance to find a solution - one that has proved beneficial on many levels.
Now instead of having to travel to Cardiff to borrow the bulky and expensive Holter ECG devices, children can go to a local hospital to be given a watch to wear or small ECG plate to carry that monitors their heart rhythm. These adapted watches or ECG plates are much less expensive and can be lent for up to six months rather than the two-week cycle. They are also far easier to wear, more comfortable and less embarrassing.
The support group for parents and patients, Welsh Heart Families, Paediatricians with an interest in Cardiology in general hospitals, and Children’s Wales Air Ambulance all got fully involved in trialling alternative technologies, inputting into the service design, raising money to purchase equipment and donating the new equipment to hospitals across South Wales.
The new digital technology is reliable, safe and accredited. The watches and ECG plates are also less intrusive and affordable, and the data is quicker to analyse.
Professor Uzun said: “The traditional equipment protrudes, even if you try to hide it under your shirt it still appears as big bulk so children feel very uncomfortable with it. And it is not unusual two weeks after returning the traditional equipment that they go into tachycardia and we have missed the opportunity.”
Parents can now view the recordings themselves, and the data can also be reviewed a lot quicker and easier without special technology. Patients download the recordings from their watch to a mobile or laptop, and send it to a dedicated email address checked by a Paediatric Cardiology Specialist Nurse, who sends it on to the consultant in charge or on-call to review it.
“If it was normal the patient was reassured straightaway and could carry on with their lives. If it was abnormal then we start medication either in Cardiff if they are Cardiff and Vale patients, or in other hospitals by our partner doctors.”
Global recognition as a Centre for Excellence
In recognition of their success the University Hospital of Wales was named a Centre of Excellence and awarded first place, from hundreds of entries, in the Supraventricular Tachycardia (SVT) Pioneer 2023 report by the Arrhythmia Alliance.
Talking about the award Professor Uzun said: “We worked hard together during very difficult times, during COVID, and the time had come to celebrate it, celebrate our success and share it with others. This is a collective success of citizens and parents as stakeholders, Paediatricians with Interest in Cardiology in District General Hospitals, Paediatric Cardiac Specialist Nurses, Children’s Wales Air Ambulance, and the Health Board”
Martha's Dancing Heart
Michelle Graham has been a long-time fundraiser for Cardiff & Vale Health Charity and was instrumental in raising funds for the project. Her daughter Martha, 8, was diagnosed with SVT before birth and has since been cured. Talking about the Children’s Heart Unit she said: “It’s as time goes on and you see her [Martha] grow and become this awesome human being that you know the gift they have given us, so we are just eternally grateful and determined to keep fundraising as long as we can”.
Martha’s Dancing Heart was started by Michelle, who has pledged to raise £1 million in her family’s lifetime in support of Neonatal Services and Paediatric Cardiology Services who cared for Martha after her birth. She has participated in multiple Cardiff Half Marathons and other athletic challenges and has organised a variety of community fundraising events.
Photo: Representatives from the team receiving the award. From left to right: Dr Rainer Fortner from Cwm Taf Morgannwg University Health Board (CTMUHB), Michelle Graham, fundraiser, Dr Max Nathan of CTMUHB, Martha, Professor Dr Orhan Uzun, Julie Montanari, Chairperson of The Leon Heart Fund, Caroline Keogh of CAVUHB, Sheranie Morris, Trustee of The Leon Heart Fund, Karina Howell of CAVUHB and Dr Amos Wong of CAVUHB.
You can support Martha's Dancing Heart here.