CHSF like to extend a huge thanks to the Hospital Saturday Fund (HSF) for funding a piece of medical equipment within the hybrid theatre called a Pedestal Mounted Contrast Injector.

This is a crucial piece of medical technology used by clinicians to assist them in a type of x-ray called angiography, which injects an x-ray dye directly into the blood to check blood vessels.

Radiographer Team Leader Katrina Kimberley said:

We are hugely grateful to the HSF and Children’s Heart Surgery Fund, and have been using this contrast injector since the hybrid theatre opened. The x-ray dye is too thick to be injected into the chambers of the heart by hand, and blood vessels do not show up clearly on a normal x-ray. The dye highlights the blood vessels when they are looked at using the x-ray machine, allowing doctors to spot any potential problems. Without this equipment, anomalies within young patients might remain undetected for longer making treatment more difficult in future. A huge thank you.

For more information about what we fund – thanks to you, visit our see

.

Hello, I’m Ruth and because of you and your fundraising I am newly appointed as Congenital Cardiac Research Nurse.

 

I have been working as a Children’s Nurse for 14 years – initially in acute medicine in Bradford before coming to Leeds to work on the Paediatric Intensive Care Unit (PICU).

 

I have a huge passion for travelling so after 18 months on PICU in Leeds I moved to the Middle East where I spent a year working on the Cardiac Intensive Care Unit in a new children’s hospital. On my return to the UK I decided that I wanted to make a difference to my patients’ lives in a different way which is how I got into my current research position.

 

I feel incredibly proud that I am able to be part of the future of congenital heart disease (CHD) care. My everyday life at work involves identifying patients for our study, attending clinics, meeting patients and their families and being with patients every step of the way through the study visit. My favourite part of the job is definitely getting to know the patients whether it’s over the phone, via email or in person so please get in touch on social media or come say ‘Hi’ if you see me in clinic or on the ward.

 

Out of work I am a huge Take That and Harry Potter fan. I am a massive animal lover especially dogs, elephants and penguins and I recently returned from safari. I like going to the gym and I am addicted to EastEnders! I enjoy spending time with my friends and one of my best friends is one of the Children’s Cardiac Nurse Specialists!

 

A big challenge in my current role is changing people’s thoughts about research and becoming part of a study. Our study aims are to improve the care and quality of life of our patients, their families and future generations.

 

We want to make study visits as easy and stress free as possible.

 

This is where all of you come in; we need your help to help us make a real change to the care of the future of children and their families living with congenital heart disease and to make Leeds a centre of excellence for CHD care.

 

We will be telling you more about our study very soon so keep an eye out for our updates. We have many plans for future studies all centred around different congenital heart diseases so if you can’t help us with our initial study you will definitely be able to help us in the future!

 

Because of you Leeds has been given this opportunity to do something amazing. Thank you!

The 3D heart printer funded by the tremendous generosity of contributors to Global’s Make Some Noise campaign in 2017, is starting to have a life-saving impact within the adult cardiology team.

The picture shows the actual printed heart of a patient being considered for surgery.

Dr Vitor Ramos, Adult Congenital Heart Disease Consultant, told us:

This patient had never been operated on since there were severe concerns about the feasibility of a surgical procedure. After seeing the 3D models, the surgeons became confident to proceed for surgery. 3D printing will have a massive impact on congenital patients, especially patients that were denied interventions and surgeries due to them being considered too high risk.

We will share more stories of how this technology is being used in future!

We spoke to Dr John Thomson, Lead Clinician for Congenital Cardiology to find out what life is like working at the Leeds Congenital Heart Unit now the new ‘Keeping the Beat’ Hybrid Theatre is open…

What has the hybrid enabled you to achieve that you couldn’t before?
“First of all, we’re now completely adjacent to all of our other colleagues doing the technical and difficult work in children’s heart surgery and catheter treatment – so we’re completely adjacent to the surgical teams. Very close to the intensive care unit. We’ve already done a number of cases directly with our surgical colleagues where we’ve been able to bring our catheter skills and their surgical skills together – the hybrid cases. We’ve treated a number of children including the smallest child we’ve ever treated at 1.7kilos who had a hybrid procedure a couple of weeks ago. So we’ve done lots of things. It’s been really good to be together, and in a very specific environment designed for what we need to do.”

Does the new hybrid theatre improve efficiency?
“Our main interest is in quality rather than efficiency. I don’t know whether we’ll treat more patients because of this but I certainly know we’ll treat them better. I think the equipment will give us better images and allow us to do better treatments, and work with other groups of professionals to get the best outcomes. So we’re not really looking at it in terms of raw numbers, rather in terms of quality.”

And has it resulted in less invasive procedures, as predicted?
“Yes it has, we’re now more able to do procedures without necessarily having to open up patient’s chests to get to the heart and we can do that in different ways. We’ve moved to treating smaller children, with keyhole techniques using this equipment. These patients really are out of hospital quicker and that’s a very important thing for us and for our patients.”

“Undoubtedly, the less invasive we are with treatment i.e. you don’t do a large open incision then patients do recover quicker and get less post-operative pain.”

“The exposure to radiation is significantly less with this equipment because it’s new and state of the art. The x-ray equipment like everything improves massively over time. Our previous cath lab was over 10 years old and the x-ray doses were very much higher than they are now in this new lab, and that’s really important for growing people that are having treatments because you want to minimise exposure. So thank you for that it makes a big difference.”

“And undoubtedly we can do more complex procedures and certainly we have available to use more arrows in our quiver for treating patients with heart problems. We’re able to choose different treatments that are available to us because of this equipment.”

In what ways does the hybrid help Leeds advance congenital care?
“This is a very technical area of medicine. To be at the forefront and do anything that’s new or better, requires a huge amount of high-end equipment and we’ve got that now. We are able to treat more difficult patients, and we are able to treat smaller patients just as we hoped we would do at the beginning and I think that’s really helping. It’s helping the patients, but it’s also helping us describe and improve some of these treatments that are used elsewhere in the country and the world as well.”

Are there any unexpected positives or difficulties with the new hybrid which you didn’t expect?
“The one main issue for us at the moment is that obviously congenital heart disease affects patients of all ages – all the way from babies before birth right the way into adult life. And the children we treat have seen the benefit of this, but of course we also have a lot of adults both young and older with heart problems and at the moment we’re now in a children’s environment which means we don’t have this facility available to them. But we hope we’re going to able to work with the hospital to maximise the resource we have and do the best that we can for all of these patients of any age that were born with a congenital heart defect.”

“I guess the unexpected things are that because we’re now closer with lots of our colleagues we have much more of a day to day relationship with them. We’ve always seen our surgical colleagues – the heart surgeons – frequently, but we see the other theatre staff. That’s nice because we’re building up both professional relationships and a team right the way across the board in this area that we didn’t have before.”

What would say to CHSF supporters who contributed to Keeping The Beat?
“I’d like to say a really big thank you to all the supporters of Children’s Heart Surgery Fund and the Heart Unit here in Leeds. The work and the fundraising you’ve done has really made a massive difference – this is a fantastic facility. And without the charity, and the work that you do to fund CHSF, we really couldn’t make the difference that we are doing to patients with congenital heart disease.”

About Keeping The Beat

Keeping The Beat is an appeal supported by Children’s Heart Surgery Fund to raise £500,000* towards a revolutionary children’s heart theatre, based at the Leeds Congenital Heart Unit, LGI.

We have commemorated some key donors on our fundraising tree outside Ward 51, however, we’re hugely grateful to

individual, family, school, business and organisation who has contributed to this campaign!

.

The children’s heart theatre is one of its kind, bespoke to the Leeds Congenital Heart Unit and will be used for treating babies and children with congenital heart disease. It’s currently being constructed and will be open in February 2019.

Why is it revolutionary?

This state-of-the-art “hybrid” facility will be used to treat babies and children with congenital heart disease (CHD) by delivering both open heart surgery, and heart procedures by cardiac catheter (keyhole surgery) in the same place.

Campaign Performance

Last updated: 16/05/2018

What does it mean?

By supporting our appeal and helping Leeds to remain at the fore of specialist cardiac surgical facilities, you have ensured the Leeds Congenital Heart Unit will continue to provide excellent care, to all the babies and children for generations to come.

Over the appeal, Children’s Heart Surgery Fund’s focus was to support the new standards created by NHS England, which are now being implemented by each centre across the country. The children’s heart theatre is the biggest and most expensive standard amongst the 200 set out by the new review.

Thanks to the support of the Yorkshire people throughout the Save Our Surgery campaign we are proud to say Leeds is the fourth busiest unit in the country. Only Great Ormond Street, Birmingham and Royal Brompton carry out more procedures.

♥ Less invasive procedures ♥ Faster recovery ♥ Shorter waiting times ♥ Less post-operative pain ♥

What will the theatre be used for?

As well as open heart surgery, the children’s heart theatre will be used for delivering all minimally invasive heart procedures by cardiac catheter on babies and children with congenital heart disease. It includes a variety of procedures such as:

Diagnostic: Aimed at understanding heart problems Interventional: Aimed at treating heart problems through a key hole procedure Electrophysiology: Aimed at treating and understanding the heart’s rhythm

By having this new theatre available to our patients it means that imaging, cardiac catheterisation and surgery will come together in way that has never been possible before.

As part of #IamABLE 2018, the foundation also held a special £30,000 giveaway. Charities, schools, clubs and non-profits were invited to apply for a share of £30K to support a new project that would support sick young people. We were over the moon to find out we had been awarded £2,500 towards a ‘Vein Viewer Flex’ – a device which uses infrared to show veins beneath the skin. This helps make the experience of blood tests or cannulas more positive for children with heart conditions and reduce their anxiety.

Jamie-Lee is 12. His mum Elizabeth found out he had a heart murmur when he was only 18-months old. Elizabeth explains what a difference having a Vein Viewer would have made when Jamie-Lee was being treated…

“Jamie was born with Marfan Syndrome, a genetic disorder of the connective tissue, which affects his heart. Jamie-Lee in hospital He has needed 6-monthly blood tests until it was time for him to have open-heart surgery to replace his aortic and mitral valves in August 2018, to allow a better blood circulation. The blood tests were necessary to monitor Jamie-Lee’s level of oxygen in his body. Due to his condition, Jamie-Lee’s veins have always been hard to locate and have required several attempts by nurses. After a particularly bad experience, Jamie-Lee used to scream as soon as he saw a needle and fight off blood tests. It was very distressing to watch and try to help him. I wish we could have had a Vein Viewer to distract him and make the tests shorter. I’m sure Jamie-Lee would have been interested in the Infrared and seeing his veins. It would have calmed him down and he wouldn’t have been as nervous about the next test. Now he is older, thankfully he is much better, but it is good to know that other children and their families will now be able to use the Vein Viewer when having the same procedures.”

Your fundraising has helped bring about an early detection initiative for babies with congenital heart disease.

Pulse Oximetry monitors can indicate heart or respiratory issues quickly and effectively by measuring the amount of oxygen in the blood.

Thanks to our supporters, £15,000 was contributed to the project, which has bought 20 monitors.

If the reading on the monitors determines a lower level than expected (under 95%) the baby can then be referred for further tests.

Led by

, a national charity aiming to improve early detection, diagnosis and care of babies with heart conditions, the initiative involves the machines being placed in maternity wards across Yorkshire and Humber.

Due to your fundraising, plus donations from

, Leeds General Infirmary is the first hospital in the region to receive this resource.

Sharon Coyle, CEO of Children’s Heart Surgery Fund said:

We’re very pleased to help fund improvements in congenital heart disease detection. It will prove hugely significant for future patients in our region.

A baby is born with a serious heart condition every two hours in the UK.

Despite congenital heart disease being one of the biggest killers of infants in the UK, less than half of congenital heart defects are picked up during routine pre-natal scanning.

Without this machine, serious defects could go undetected. Tiny Tickers is hoping to roll this programme out nationally in the coming months.

Dr Elspeth Brown, a consultant paediatric and fetal cardiologist at Leeds Congenital Heart unit added:

We really welcome this initiative from Tiny Tickers which will undoubtedly save lives.

Thanks to all our supporters for your dedication and commitment to our cause, and we will continue to share the brilliant equipment your hard work is funding. Sign up to the blog, to make sure you don’t miss anything!

Children’s Heart Surgery Fund only exists because of your amazing fundraising and donations. Thanks to you, we’ve been able to approve some exciting projects for funding.

Read on for some prime examples of how your donations are helping the Leeds Congenital Heart Unit continue their amazing work, looking after families of patients with congenital heart disease. Without your help, we couldn’t provide these key resources that can care for a child’s heart, mind, family and future.

• Two “ECMO” machines – vital cardiac and respiratory life-support systems. You can read an amazing example of how this equipment saves lives in the next edition of BraveHearts!
• 6 additional pulse oximeters, consumables and storage boxes for the “high-risk home monitoring programme”. These monitors give patients and families reassurance and extra support from home, helping to identify trends in oxygen levels
• Additional FitBits for the Adult team to help improve and monitor fitness in some patients

• An interactive and mobile touch screen TV for Ward 51 to entertain kids and families
• Projector lights for the ward for baby sensory stimulation and a USB charging station for parents
• An interactive floor and projector for Ward 51 allowing patients to engage in fun activities and games – entertainment and therapy combined
• Equipment to enable patients, especially our younger ones, to watch DVDs while undergoing lengthy MRI scans

• We will be giving home-from-home Eckersley House £ 30,000 for the next 3 years to continue their amazing work providing accommodation for patients’ families
• We threw our annual Christmas Party for our families – all had a brilliant time!

• Dr Malenka Bissel is conducting vital research into the ideal time for valve replacement operations, and funding will allow the team to identify leaky valves in advance of traditional methods
• A year of advanced training for a senior paediatric cardiology trainee to develop expertise in the management of heart muscle disease and rare genetic heart disease in children
• A place on a Masters course in Health & Community Care at Leeds Beckett University for a sister on the Paediatrics Intensive Care Unit (PICU).

We can’t thank you enough for your support in funding these vital projects! We will keep you informed through regular blogs, social media posts and magazine articles about future projects approved for funding.

Hybrid theatres combine the traditional functions of a catheter laboratory with the surgical functions of an operating room.

Details of the hybrid theatre equipment funded by our

are starting to become clearer.

Here’s some descriptions of some of the likely items being supplied by Philips.

• Hybrid theatres are state-of-the-art. They can perform a variety of clinical procedures, which may involve a range of screens, views, software and applications. Flexvision Pro is a system designed to intuitively control all the connected technology in one place. Team members can easily take over control of applications from each other to promote effective teamwork.

• This is a touch-screen accessory forming part of the Flexvision system, and allows control of X-ray images right next to the actual procedure. Philips call it “the next step in usability”, as clinicians can manipulate an image with one finger, and pinch, zoom, pan and flag images for processing.

• This technology is designed to improve care by minimising patient stress and anxiety during procedures. It works by giving the patient a sensory distraction to focus on, using lighting, sound, and the projection of images. Patients can even personalise their experience by choosing a theme such as a beach, mountains or a comic strip. With the Ambient Experience in place, patients can feel happier and procedures can be carried out more quickly.

For more information, visit our

.

Children’s Heart Surgery Fund have had a great 2016, thanks to you, the wider CHSF team and all the staff at the Leeds Congenital Heart Unit.

We’ve all but reached halfway in our Keeping The Beat campaign, hosted numerous fundraising events (including Wear Red Day which raised over £36k alone) and made friends with a host of inspirational patients and their families.

Here’s just some of the projects, people, facilities and equipment we’ve funded this year.

• 30 INR testing Kits
• A Telemedicine link between the Neonatal Unit at Bradford Royal Infirmary and the Paediatric Cardiology dept at LGI
• A Paediatric resuscitation trolley for Cardiac and Neuro Outpatients Department
• 10 Fitbit Flex monitors & 10 Fitbit Aria Scales for ACHD patients trying to lose weight
• 30 pedometers to monitor and progress exercise for children and adults with congenital heart disease used by Special Cardiac Physiotherapists
• 64 AliveCor devices that stick to a mobile phone to record an adult patients ECG when they are having symptoms

• Annual renewal of maintaining fish tank on Ward L51
• Supply of water machines for patients and staff on PICU and Ward 51
• 10 bottle warmers for parents to heat up milk for their baby and 10 electronic kitchen scales used to weigh nappies on critically ill babies to ensure they are drinking enough fluid
• Reward stickers to give to cardiac children inpatients
• Bright coloured folders that are used daily by bedsides on Ward L51 containing important information about the children
• Craft materials for therapeutic sessions with children for surgery preparations carried out by the clinical psychologist
• IPad Air and case for use by heart children having procedures or going to be anaesthetised in the cath lab or theatre (as a distraction tool)
• Reward stickers to give to children for talking in therapeutic sessions carried out by the Clinical Psychologist

• Holistic parent expenses for 27 families
• Funding of Clinical Psychologist for one year to provide clinical psychology services to the Congenital Cardiac service
• Travel, accommodation and fees for clinicians, physios and psychologist to attend important conferences

• Creation of a designated adolescent seating area in the Cardiac/Neuro waiting area
• Chairs and wall art for waiting area, counselling and scan rooms for Fetal Cardiology
• Sofa, armchairs and cushions to provide a comfortable room for parents when they are being given sensitive information following a heart scan
• Design and supply a pull-up banner and 500 folders for the young person’s area within Cardiac and Neuro outpatients

We’re really proud of our achievements in 2016, and you should be too.

Bigger challenges lay ahead, and we look forward to seeing you all in 2017 to help support the Leeds Congenital Heart Unit.