We’re delighted to share some incredible news from the Leeds Congenital Heart Unit Echo department.

The Congenital Echo Department at Leeds General Infirmary has become the first congenital department in the UK to achieve Departmental Accreditation from the British Society of Echocardiography (BSE) for paediatric and adult congenital echocardiography, as well as training provision.

The Congenital Echo Team, made up of highly specialist cardiac physiologists and clinical scientists, provides vital heart scans and assessments for patients of all ages. Working closely with consultants and the wider multidisciplinary team, they play a key role in diagnosing, monitoring and supporting people with congenital heart conditions throughout their lives.

Jan Forster, Consultant Congenital Clinical Scientist, said:

“This accreditation is a recognised benchmark of quality and demonstrates that the department meets established and robust quality standards. It also shows that the department is well organised, with appropriate facilities, equipment and processes to ensure the services delivered are clinically adequate to provide safe and effective patient care.

“Special thanks to Sophie Bancroft and Laura Duffy, who have been pivotal in this team effort, which has taken many years and a great deal of hard work to achieve.”

We’re incredibly proud to support such an outstanding team as they continue to provide world-class care for children, young people and adults living with congenital heart disease across Yorkshire, The Humber, N.E Lincolnshire and North Derbyshire.

Photo credit: Leeds Teaching Hospitals

Supporting excellence in congenital care

We’re proud to support the incredible teams at the Leeds Congenital Heart Unit. With your help, we can continue funding projects and initiatives that make a real difference to patients and families across our region.

Donate

“When your child is having open heart surgery in hospital, it is so frightening and worrisome we were just so glad that we had this charity to support us and other families who went through the same thing without your support.“
— heart mum

During the month of June…

• 46 families worked with overall

• 29 families received a tailored packaged of Family Support

• 17 families engaged with

  —

• 6 young people and their families worked with and supported

• 7 Travel Grants given
• 1 attended Cardiac Cafe
• 18 Supermarket Vouchers given
• 0 Exceptional Grants given

Collaboration

Somerville ‘Hearts Together’ Conference
This month, Katie Bear, Ruth and Lu attended the Somerville Heart Foundation ‘Hearts Together’ event in Leeds. It was a fantastic day filled with talks about wellbeing, medication and the lives of adult heart patients – one of whom had her first heart surgery in 1950! We have left feeling full of excitement for the future and look forward to more events like this!

Cardiac Cafe in Scunthorpe
The team were on the road again this month with a Cardiac Café in Scunthorpe, hosted at one of the local family hubs. The fantastic regional Children’s Cardiac Nurse Specialist, Jemma, come along. The topics of wellbeing, nursery and signposting to local services came up – alongside a good brew and a pastry. Check out future events and sign up.

Support on the ward
Father’s Day

In June we celebrated Father’s Day with the families on Ward 51. We provided a Father’s Day themed wellbeing trolley and a box of goodies for families to gift.

When a family is on the ward there may not be time or the mental space to think about making these special occasions. We want to elevate some of that pressure for families, by enabling children to pick something out for a parent/ carer while they are in hospital, lets families mark these events in a way that works for them.

Community and our fantastic families on Facebook

As a team we want to support families at every stage of the journey, and sometimes families are there to support each other.

This month the Family Support team received a request for support from a family who have had a postnatal diagnosis, who were apprehensive about surgery. The family had accessed forums online that shared some information that heightened this concern for the family.

Our team signposted the family to our private Facebook group and the messages of encouragement, peer to peer connection and wealth of experience of being a heart parent/carer.

The stories of hope and care that were shared with this new heart family were a fantastic example of how CHSF helps families find community in a time that has often been described as isolating.

How is Family Support making a tangible difference to families?

Long term family on the ward

The Family Support team have been working closely with a family who are on their fourth month as an inpatient. The Team first met [Baby]* and her family in November and were able to refer the family to early help, assist the family with assessing a food bank and provide care and wellbeing to the family before an initial discharge from hospital in December.

The family were readmitted in March and were already known to the Family Support team. The family were immediately able to access an emergency admission pack as well as weekly Tesco vouchers and a travel grant.

Through our wellbeing initiative, we were able to tailor how we worked with the family, providing siblings with activities, mum with essential items and ensuring that the family had the ability to accesses food that was tailored to their dietary needs.

The team have been able to navigate a language barrier and provide children’s books and resources in Urdu for the family. This small gesture was appreciated by the family as they felt they were able to access what they needed in a way that worked for them.

*Name removed for privacy

“CHSF helped make me the young man I am today”

This month sees a lot of our young people finishing secondary school and looking to the future. We provide a service that continues to support our Heart Warriors through this journey as they head into the world of post 16 education. One of our fantastic young people, Archie, has been with CHSF from the start and wanted to share this:

“As I was born with a heart condition Children’s Heart Surgery Fund have always been there for me, and I have grown up with them! I have never known any different and they have been there to support me through every stage of my childhood, almost like an extension of my family.

“When I got into my teenage years the fun really started with so many events. I have eaten so many Dominos pizzas with the CHSF team I have lost count! From fun days out at activity centres, to safe boxing with former champions! The list goes on, a particular favourite of mine was the paint and sip night with mocktails! My painting is still proudly displayed in my lounge! CHSF helped make me the young man I am today, and I can’t wait for more activities!”

Join CHSF’s Youth Hub

This free membership gets you access to our events, an opportunity to be a member of the Youth Voice panel and to influence what CHSF does for you going forward. Become a member to build peer connections and have the opportunity to connect, have fun and make a difference. Find out more

It’s only with the help of our incredible supporters that we can continue to be there for every family that needs us. Thank you.

Find out more about CHSF Family Support

We are extremely grateful to The Liz & Terry Bramall Foundation for their generous support over three years towards our Family Support Service.

“The support was amazing and the team got me through the hardest time of my life. Amazing support” — heart mum

During the month of May…

• 39 families worked with overall

• 23 families received a tailored packaged of Family Support

• 8 families engaged with

  —

• 6 young people and their families worked with and supported

• 13 Travel Grants given
• 7 attended Cardiac Cafe
• 27 Supermarket Vouchers given
• 0 Exceptional Grants given

Moments this month

Chylothorax Snacks
Sometimes the smallest ideas can make the biggest difference. This month, through conversations with the play team and dietitian, we identified a new way to support children on Ward 51 who are following a Chylothorax diet as part of their recovery.

A Chylothorax diet is a special low-fat diet used to help some children recover after heart surgery by reducing strain on the body while it heals. We recognised that many of the snacks typically offered through the wellbeing trolley were not suitable for these patients, meaning some children were unable to fully take part when the trolley visited the ward.

In response, we created a dedicated snack box filled with “Chylothorax safe” options for children and families to choose from. This simple initiative has helped ensure children on restricted diets can still be included in wellbeing activities, offering them greater choice, independence and a sense of normality during their hospital stay.

“Thank you to all the supporters that have allowed us to provide some tasty snacks for our patients on the specialist MCT diet! The diet is needed in some cases after surgery to stop drains flowing. It is really hard to stick to and very limited, meaning meals can be boring, and snacks can be repetitive. Having some different options available is exciting and brightens up a boring day on the ward. It will also help children struggling with weight loss to get some extra energy on board. This will really help so many children moving forward.” – Alix, Dietitian

Being able to choose a snack alongside other children may seem small, but for families navigating long inpatient stays and recovery, these moments of inclusion and autonomy can have a meaningful impact on emotional wellbeing.

Family Support on the Road
Leeds Cardiac Cafe

This month we hosted our Cardiac Café at Café 21 Co, a lovely coffee shop run by our friends at Sunshine and Smiles. We always value opportunities to work alongside organisations whose values align so closely with our own, and it was incredibly special to bring families together in a space built on inclusion and understanding.

The Cardiac Café provided a safe and social environment where families could connect with others who simply “get it”, without needing to explain their story, justify their emotions or feel like they need to hide their experiences.

These informal community spaces continue to be so valued by the families we support. They offer opportunities for peer connection and create moments of understanding away from the hospital environment. For many parents, simply being able to sit with others who understand their journey can be incredibly powerful.

One parent shared:
“Thank you to the ladies at the Cardiac Cafe in Leeds today, enjoyed a coffee with some lovely company. Highly recommend for families to come along to these in the future, a great space to share all sorts of emotions and stories with a team who have been with us from the very start.”

Feedback like this this highlights the importance of creating compassionate spaces where families feel listened to, supported and part of a wider community throughout their heart journey.

How is Family Support making a tangible difference to families?

Celebrating Siblings

This month, we continued to recognise the importance of supporting not only our patients and parents, but the wider family unit too. One family has now been on the ward for over six weeks, with mum staying alongside baby throughout this time. During the month, the patient’s older sister was able to visit the hospital for a special sibling visit. To help celebrate this important moment, we presented her with a personalised “Super Sister” certificate, including her name and the date of her visit.

Although a small gesture, the impact was significant. The visit allowed the sibling to feel included in her sister’s journey and recognised for the important role she plays within her family. Her time on the ward was filled with cuddles, play and quality time together, helping to maintain family bonds during a prolonged hospital admission. Alongside ongoing practical support through travel grants and weekly Tesco vouchers, this moment highlighted the importance of emotional wellbeing and ensuring siblings feel seen, valued and connected during challenging times.

Taking a break

Long-term hospital admissions can be a hard time, particularly when families are balancing life between the ward and hospital accommodation. This month, we supported one family who have been in hospital for over two months with a Deliveroo voucher for mum and dad.

Following conversations around wellbeing support, the family shared that what would help them most was the opportunity to enjoy a hot meal together without the pressure of cooking or leaving the hospital. By providing a takeaway voucher, parents were able to spend intentional time together in the Brotherton Wing accommodation while remaining close to the ward and their child. This offered both comfort and peace of mind.

While practical in nature, this support created space for parents to pause, reconnect and feel cared for themselves, something that can often be overlooked during lengthy inpatient stays.

Youth Event
Boxing with Tommy Frank

This month we teamed up with our ambassador, Tommy Frank, to deliver a ‘Boxing for Wellbeing’ workshop for young people. Tommy Frank is a professional boxer from Sheffield who was born with congenital heart disease and underwent open heart surgery at the age of five. He went on to build a successful career in boxing, becoming a champion and using his platform to inspire others.

The session gave young people the opportunity to learn basic boxing techniques in a safe, supportive and inclusive environment, while also hearing Tommy’s powerful personal story. His journey offered a clear message that a health condition does not define potential, and that goals and ambitions can still be achieved, even if the path looks different.

Young people were fully engaged throughout, working collaboratively to learn boxing combinations, try something new, and build confidence through movement and activity. The workshop also provided a valuable space for focus, self-expression and wellbeing, with both young people and staff actively participating and enjoying the session together.

Tommy’s encouragement and openness had a lasting impact, helping young people reflect on resilience, identity and what they can achieve.

Find out more about our work with young people here.

It’s only with the help of our incredible supporters that we can continue to be there for every family that needs us. Thank you.

Find out more about CHSF Family Support

We are extremely grateful to The Liz & Terry Bramall Foundation for their generous support over three years towards our Family Support Service.

“Thank u for remembering me. I can imagine u meet lots of families“
— heart mum, during a ‘touching base’ call

During the month of April…

• 63 families worked with overall

• 25 families received a tailored packaged of Family Support

• 38 families engaged with

  —

• 16 young people and their families worked with and supported

• 5 Travel Grants given
• 10 attended Cardiac Cafe
• 21 Supermarket Vouchers given
• 0 Exceptional Grants given

Moments this month

There for the ‘firsts’
“We have a 4-month-old who has been in hospital since birth. Like many of our newest heart warriors we watch them grow and develop, we are there to see their firsts and share the small wins with families.

“This particular baby is developing to be very nosey and has started exploring his environment as Mum holds him in her arms which is something she wasn’t able to do for such a long time. Knowing the family and recognising how much he is starting to explore we were able to wheel in the L51 Sensory Trolley (funded by CHSF) – this is something Mum had never used before.

“On seeing how happy both Mum and Baby were as he watched himself in the mirror whilst looking at the lights, we knew this gesture of understanding their needs had created a lasting first for them and a small win we were able to share together.” – Lu, Family & Youth Support Worker

Including the whole family
“When a newborn was rushed to Leeds as an emergency admission, we were there immediately for the family to offer the practical support needed, however it is the relationship we have built that has enabled Mum to feel safe, voice her needs and feel connected to CHSF.

“The family is of Muslim faith, and this is something that is so very important to her especially now her son is critically ill. We have prioritised respecting Mum’s religious beliefs, talking about this with her, asking questions and taking time to understand the importance of it. Her family are also very present and supportive, and again we take the time to greet them, ask how they are and make them feel included.

“We go the extra mile to make each family feel like they are the most important thing to us in that moment, and we can’t possibly put a cost on valuing another person and what this means to them as an individual.” – Sarah, Head of Family Support

Family Support on the Road
Sheffield Cardiac Cafe

This month the team went to Sheffield for our fourth cardiac café of the year. Four families (10 people) attended and shared their journey and experiences. Over cups of tea families were able to make connections and hear about what helped them through their journey. For some it was fundraising, for other it was music and sometimes, it was simply being with their family.

The Family Support team were able to connect with families and provide support and referrals after the event.

How is Family Support making a tangible difference to families?

Visiting siblings and cousins

In April we have seen many families visiting the ward over the Easter holidays and on sunny afternoons. We have been able to keep siblings and visiting cousins entertained with packs of crafts, Lego and ‘Super Sibling’/’Super Cousin’ certificates. These make the children who aren’t the patient feel seen and valued by CHSF.

Young adults on the ward

This month the team have been supporting long-term inpatients on the wards. This has included a craft session, organising a much appreciated Bubble Tea treat, and working closely with the team of Leeds Teaching Hospitals Trust youth workers to engage young people and encourage them to attend Youth Club.

Heart families in community

This month saw the launch of the Family Support ‘Touching Base’ model where the team follow-up with families after they have been discharged. This is to check in with families and see if they need any more support from CHSF.

From these calls the Family Support team have supported families with finding food banks, signposting for housing support, connecting families with their local family hubs and simply just having a chat.

It’s only with the help of our incredible supporters that we can continue to be there for every family that needs us. Thank you.

Find out more about CHSF Family Support

We are extremely grateful to The Liz & Terry Bramall Foundation for their generous support over three years towards our Family Support Service.

For children and young people living with congenital heart disease – and for their parents and carers – outpatient appointments can bring anxiety, sensory overload and lots of waiting in an unfamiliar environment.

Thanks to funding from Morrisons Foundation, and because of the incredible generosity of Children’s Heart Surgery Fund (CHSF) supporters, a Rhino Sensory Voyager Hurricane Trolley is now supporting young patients and families at Leeds Children’s Hospital.

CHSF supports the Leeds Congenital Heart Unit at Leeds General Infirmary, it’s patients with congenital heart disease, and their families across Yorkshire, North Lincolnshire and North-East Derbyshire. We know from families that hospital experiences don’t just affect the moment you’re there – they can shape how a child feels about treatment well into adulthood.

The Rhino Sensory Voyager Hurricane Trolley has been introduced to help change that experience for children and young people attending cardiac outpatient appointments. This mobile, multi-sensory trolley brings together colourful interactive projections, fibre optic lights and calming sounds, helping to create an environment that can be tailored to each child’s needs.

Whether it’s used to create a calm, relaxing space, a playful distraction, or a quiet “safe zone”, the trolley gives families more choice and control during what can often be a stressful visit.

A big impact for children with additional needs
Outpatient clinics can be overwhelming, particularly for children with additional needs.. The Leeds Congenital Heart Unit cares for a high proportion of children with learning disabilities – for example, congenital heart conditions are present in around 40–60% of babies born with Down’s syndrome.

Until now, there have been limited sensory resources available in the outpatient setting. The Rhino Sensory Voyager Hurricane Trolley helps to fill that gap, supporting children who may struggle with noise, bright lights or long waiting times – while also easing anxiety for parents and carers.

We previously funded a sensory trolley on the children’s heart ward (L51). One parent said:

“We were delighted to be asked if Hollie wanted the sensory trolley in her room. Hollie absolutely loves the coloured lights. It gives her a great distraction from other things around her.”

A member of the Leeds Teaching Hospitals NHS Trust Learning Disability and Autism Team also highlighted the wider benefits:

“They provide people with calming sensory stimulus which leads to a more relaxed environment, reducing anxiety and boredom and promoting an environment where health care becomes more accessible.”

The sensory trolley will be used every day in the cardiac outpatient waiting area and can be moved into individual clinic rooms when needed. Around 4,700 young patients attend cardiac outpatient appointments each year, and many thousands of family members pass through the department alongside them.

We expect the Rhino Sensory Voyager Hurricane Trolley to benefit countless children and families – promoting enjoyment, relieving anxiety and helping children build more positive associations with hospital care.

Thank you Morrisons for making this possible!
We are incredibly grateful to Morrisons Foundation for funding this vital project and recognising the importance of emotional wellbeing alongside medical care.

Your support helps us respond to what families and clinical teams tell us they need most – creating kinder, calmer experiences for children in our region living with lifelong heart conditions.

#BecauseOfYou

Because of you, we can keep being there for our world-class heart unit, patients and families.

By making a donation to CHSF you are ensuring vital funding to the Leeds Congenital Heart Unit and personalised support to families when they need us most.

Donate now

• 27 families worked with overall

• 19 families received a tailored packaged of Family Support

• 8 families engaged with

  —

• 13 young people and their families worked with and supported

• 17 Travel Grants given
• 4 attended Cardiac Cafe
• 12 Supermarket Vouchers given
• 0 Exceptional Grants given

“I honestly can’t thank you and the charity enough for all the support we received. It meant so much to us during such a difficult time.“ — heart mum on the ward

Moments last month

— Heart Mum

The Family Support team purchased decorations for a young person and her family to decorate their bedspace and make it their own. The young person helped decorate buns for all families on the ward to celebrate Eid.

Family Support on the Road Bradford Cardiac Cafe

This month we hosted our Cardiac Cafe in Bradford. Families were able to meet each other, chat about their experiences and have a break in their day with people who understand.

After the success of 2025’s event, we hosted the cafe at Bradford West Family Hub again and enjoyed using the space and all the toys!

The ball bit was a group favourite!

How is Family Support making a tangible difference to families?

This month CHSF have provided breastfeeding packs – including sanitary items, bonding square and nappies – for the new parents at the beginning of their heart journey.

In March we launched CHSF’s youth voice panel, getting feedback from young people about what they want to see from CHSF support as they get older. We met with young people online and in person to get their feedback on what we had to offer and we are exploring other ways of working with young people to develop the service – watch this space to see what they had to say!

Young person feedback

Working together

There is something so special about charities coming together to support a family in need and this month we saw first hand how this can have such an impact.

A massive thank you to From the Heart Charity, Retford Lions Club and Baby Bank Alliance for helping secure some very important and much needed items for a lovely heart family following their discharge from hospital.

It’s only with the help of our incredible supporters that we can continue to be there for every family that needs us. Thank you.

Find out more about CHSF Family Support

We are extremely grateful to The Liz & Terry Bramall Foundation for their generous support over three years towards our Family Support Service.

written by Helena Vesty, NHS, social care and patients reporter for the Manchester Evening News

Looming towers, dark red brick punctuated with black window frames, Gothic spires. An imposing Victorian stalwart that has dominated this northern city centre street since 1869.

It’s enough to make the most regular hospital visitor shift nervously in their shoes. Yet, for most of those people, they walk through the wood-panelled doors with a pit in their stomachs more vast than their surroundings could ever confer.

They are the parents and loved ones of fragile newborns in their first day of life, some extremely premature; weeks-old little ones struggling to cling on in the midst of complex heart conditions; babies who have battled terrifying odds for months.

But this is the only place in the whole world that uses a certain method of testing that can change the future of these little ones, and give doctors and parents crucial information they need to save these babies.

Here at Leeds Children’s Hospital, consultant in paediatric cardiology Dr Malenka Bissell and her team have found a way of giving MRI scans to these most high risk babies, without any sedation or contrast agents, substances that help blood vessels ‘light up’ on the results.

They use a baby MRI incubator, a pioneering advancement that allows babies too fragile to undergo regular MRI and CT scans to be imaged. The baby is wrapped in a thin blanket with cameras built in and placed into the warm incubator, which is then sent through an MRI machine.

Other countries, including in the United States and areas of Scandinavia, do MRI scan babies with the incubator. But Dr Bissell’s team is unique in the world in giving babies these scans while the baby sleeps naturally.

“I was very interested in the sickest of babies, our high risk programme. I was looking for ways of how to reduce their risk of dying,” Dr Bissell told the Manchester Evening News.

“We had some babies that couldn’t actually go through the MRI scanner [if we used general anaesthetic] because they were so sick that, once they had gone to sleep, they weren’t stable enough to have the MRI scan.

Dr Malenka Bissell (Image: Sean Hansford | Manchester Evening News)

“I was very keen to find options of how we could image them while awake, because they do it for the brain. I decided that it must be possible to do it without contrast and without giving any sedation for the heart.

“In the world, we are now the only centre that does that routinely without contrast and sedation. We’re doing a version that is completely hands off and as natural as possible.

“We’ve now given MRIs to over 100 babies. What we find is that the MRI can alert us to problems, probably about one or two weeks before we see any changes on the ultrasound scans.

“It really helps me to understand where the blood flows, how quickly the blood flows, how much it goes where.

“It really helps to tailor medical treatment, and more detailed surgical planning. More importantly, I can predict any problems that may arise, so I’m in a much better position to tell my intervention team when they go and have their catheter – wires put into the babies hearts – if they’re going to encounter any problems, and if we need to consider any procedures as part of that.

“As soon as the baby is born, we can scan. There are quite a few babies that we have scanned on day one of life to help with our decision making.”

A model baby shows how the baby is wrapped in a blanket, which has cameras inside, and placed in a warming incubator (Image: Sean Hansford | Manchester Evening News)

Thanks to the numbers provided by the MRI, for some babies, Dr Bissell could prove their hearts were strong enough to support life-changing surgeries.

“The difference is having a near normal life expectancy versus living to 20 at most,” she said. “Those are the kind of decisions that we have been able to make.”

Firstly, Dr Bissell worked with MRI manufacturer Siemens to cut down the length of a scan from almost two hours to just half an hour. Then she used years of expertise – both as a doctor and as a mother herself – to curate an experience for parents and babies that encourages babies to fall asleep naturally.

By connecting with and understanding her patients and their families, she honed a routine. Parents feed their babies when they arrive for the appointment to make them sleepy, wrap them up cosily, and wheel them up and down the corridor.

Then comes music, played at a loud level to match the noise of the MRI machine. The doctor has learned that it’s not the volume that keeps the babies awake, but the stop-start of the machine that disturbs them.

Often, Dr Bissell plays her ‘magic CD’, filled with her native German lullabies. She joked that she’s never known a baby who didn’t ease off into a lovely slumber to this music – apart from her own daughter.

Sometimes, she also plays Disney music or, for families of Muslim faith, the Quran, whatever will make them feel most at rest.

Once the babies are nearly asleep, the babies get noise-cancelling headphones and are go into the MRI room, where the lights are dimmed. And the scan goes ahead.

Dr Bissell can view the results as the baby is being scanned in the MRI machines (Image: Sean Hansford | Manchester Evening News)

Advances like this are vital for families like the Silvers. When they were expecting their first child, mum Charlotte and dad Joe thought the pregnancy was going just fine.

But, ‘as soon as he was born, it was obvious there was a problem’, Charlotte told the M.E.N. These new parents could never have imagined that their little boy, Billy, would arrive five-and-a-half weeks early in October 2023, in an emergency C-section, with an undiagnosed heart condition.

Billy was born with pulmonary atresia with intact ventricular septum, a rare and critical congenital heart defect. In the womb, Billy’s pulmonary artery didn’t open, so there was no blood flow to the bottom right ventricle of his heart. “It was like doing a constant bicep curl, but nothing moving through it,” Charlotte shared.

“He built up a lot of muscle, so it was extremely small.”

Billy arrived five-and-a-half weeks early in October 2023, in an emergency C-section, with an undiagnosed heart condition.

Billy was born at a general hospital close to their Harrogate home, needing an urgent transfer to a specialist hospital equipped to deal with his complex condition.

“He was emergency transferred, luckily, to Leeds which is down the road from us,” said Charlotte.

Billy was meant to be three-and-a-half kilos before his first open heart surgery, but everything changed when he went into cardiac arrest. When he had the operation in an emergency, ‘he wasn’t even two-and-a-half kilos’.

The first operation had to perforate the pulmonary artery to try and get the blood flowing,” shared Charlotte. In another heartbreaking turn, it failed.

“We didn’t know if he was going to die or not,” added Billy’s dad. “If this was the only chance we’re going to have to care for him, then we had to do it – it wasn’t giving him milk, or giving him a bath, wrapping him up, and sending him to bed like it normally is – it was changing a tube.

“But if that’s the only thing we could do because he might be dead this time next week, then that’s what we’d do.”

Billy was born with pulmonary atresia with intact ventricular septum, a rare and critical congenital heart defect.

Billy defied the odds. Three months later, he was finally able to go home for the first time, in January 2024. A few months after, he was asked to come back for more tests.

Billy had always been examined using echocardiograms, known as ‘echos’ – ultrasound tests are routinely used to look at the heart’s structure, pumping function, and valve health.

But they have drawbacks, especially for a ‘prodded and poked’ little baby, ‘having a blood test every day and wires coming out of him’.

“There were a lot of times we’d come out of an echo, and Malenka would say ‘we didn’t really manage to get a good view of X, Y, and Z’ – either because he was unsettled or other reasons,” said Joe.

Parents, Charlotte and Joe Silver, were determined to make sure they could give Billy the best care possible when he went home from hospital, learning as much as they could from long stints on wards (Image: Sean Hansford | Manchester Evening News)

But when he was invited back, Dr Bissell wanted to try doing an MRI – as one of the first patients to go through the process she was trying to craft. Still early in creating a routine that would work for most babies, Billy struggled to settle.

So the family and the doctor decided to get Billy to sleep during the scan by letting mum Charlotte go in the machine while breastfeeding the baby.

Unconventional perhaps, but Dr Bissell said Billy’s MRI gave results that could change the course of his treatment, and ultimately his life.

“We’ve had quite a few babies, like Billy, where the MRI actually showed us that the heart is more capable than what we were predicting in ultrasounds,” she explained. “In Billy’s case, he had a good left heart, but there was always a question about whether the right heart would be able to do anything.

“Because of the MRI, we were able to actually design a bespoke surgery for him, rather than the standard surgery, so that we are still making use of that right heart.

“Actually, we have seen some growth of that right heart over time showing us that the MRI was right, and it was right to say that actually it can cope with more than the ultrasound was showing us.”

Billy (Image: Sean Hansford | Manchester Evening News)

The MRI results also allay the fears of parents like Charlotte and Joe.

“Parents really struggle with the uncertainty in the high risk programme,” Dr Bissell added.

“With the MRI, we can provide more certainty and that is really important for parents, even if there are problems. And because we’re so hands-off, we can also repeat the MRI.”

Doctors can check medical care has worked. Or, if a child has such poor heart function they couldn’t have surgery at first, they can be regularly monitored.

Dr Bissell is now working with hospitals globally to teach her method – including sharing her ‘magic CD’. But this style of treatment still only exists in Leeds – and the incubator here had to be funded by the charity, Heart Research UK, alongside the Children’s Heart Surgery Fund which has a base at Leeds General, and other groups.

The Silvers say they were ‘extremely blessed’ that Billy managed to get a bed in Leeds, only 40 minutes away from home, but it should at least be available at major cardiac centres across the country for every family like theirs. While Dr Bissell is hoping that the incubators will be funded more widely through the NHS, in light of her promising results.

“We were one of the first families to use the MRI, and that imagery helped Malenka push things forward for the incubator,” said Charlotte.

“Malenka is the reason that Billy’s surgery has been directed in the way that it has, it was her plan. We couldn’t be more grateful for that.

“And if [the MRI] helped her get to the conclusion that ultimately helped Billy, and more families can benefit from that, that’s amazing.”

Billy playing with a toy version of the MRI machine (Image: Sean Hansford | Manchester Evening News)

Billy’s first years have been unimaginable, but thanks to his care – shaped by Dr Bissell’s groundbreaking work and the unwavering dedication of his parents – rays of sunshine are breaking through the clouds.

Billy’s last scan shows ‘his heart was looking better than they ever could have hoped for really’, shared Charlotte. Unless you looked at his scar, his parents told, you might never know he had a heart condition.

“For me, the biggest reward is seeing children like Billy doing so well, living normal lives, despite their really quite severe heart condition,” added Dr Bissell.

Instead of wires surrounding the now two-and-a-half-year-old Billy, he’s racing around with Bluey, Peppa Pig, and the Potato Heads.

“Billy’s excelling – he’s walking now, his speech is amazing, he is just enjoying life. So when he does, you’ve got to let yourself go with it,” Charlotte sighed, looking proudly on at her son.

“He’s an absolute legend. There’s only one Billy Silver.”

Because of you, we can keep being there for our world-class heart unit, patients and families.

By making a donation to CHSF you are ensuring vital funding to the Leeds Congenital Heart Unit and personalised support to families when they need us most.

Donate now

Groundbreaking new equipment for our youngest heart patients at Leeds Children’s Hospital.

Thanks to your incredible generosity Children’s Heart Surgery Fund has funded a state‑of‑the‑art Snuggle™ MRI coil for the Leeds Congenital Heart Unit – the first hospital in Europe to use this pioneering technology.

This special “coil” acts like a super‑lightweight, flexible camera that gently wraps around a patient like a blanket, capturing highly detailed MRI images. And it’s been designed especially for babies and children, helping make their scans safer, quicker and far more comfortable.

For babies who need a scan in our MRI incubator (also funded by CHSF), the coil allows them to be fed, soothed and settled to sleep naturally before being placed into the MRI – meaning many infants can now avoid a general anaesthetic altogether.

The coil can even be wrapped around baby and parent together, so little ones can be scanned while being held or fed – dramatically reducing stress and helping families stay close during what can be a worrying time.

And because it’s ultra‑lightweight, the Snuggle™ coil can also be used for pregnant women, allowing Leeds clinicians to safely scan babies before they are born, while still in-utero.

To help older children too, the coil comes decorated with friendly dinosaurs – turning intimidating medical equipment into something comforting and fun.

In our video, Dr Malenka Bissell demonstrates how the new coil works and explains the transformative benefits it brings to young heart patients and their families.
We were delighted to welcome Brian Welch, Vice President of InkSpace Imaging, who flew from the US to deliver the coil to Leeds and celebrate this milestone with the team!

This innovation is only possible because of you – our funders, supporters and community who continue to champion the very best care for children with congenital heart disease.

We are very grateful to everyone who has helped to fund this equipment including: The Arnold Burton 1998 Charitable Trust, The Grace Trust, The Hobson Charity, Lord Barnby’s Foundation, Michael Cornish Charitable Trust, PF Charitable Trust, The Purey Cust Trust, Sovereign Health Care, Westfield Health and Willie and Mabel Morris Charitable Trust.

Thank you for helping us bring world‑leading technology to Leeds, and for transforming the experience of MRI scans children and families in our region living with CHD.

Because of you, we can keep being there for our world-class heart unit, patients and families.

By making a donation to CHSF you are ensuring vital funding to the Leeds Congenital Heart Unit and personalised support to families when they need us most.

Donate now

During the month of February…

• 50 families worked with overall

• 26 families received a tailored packaged of Family Support

• 24 families engaged with

  —

• 17 young people and their families worked with and supported

• 22 Travel Grants given
• 8 attended Cardiac Cafe
• 27 Supermarket Vouchers given
• 3 Exceptional Grants given

Heart Month

Sharing Food Together
57 portions of food were provided by CHSF for families and staff in the hospital observing Ramadan. We teamed up with another local charity, Candlelighters, who provided craft activities and water for the event. A big thank you to Tharavadu and Mowgli for donating food to this event.

Unique Ways Coffee Morning
We had the wonderful opportunity to attend a Cardiac Cafe in partnership with Unique Ways in Halifax. It’s fantastic to see other services mirroring the Cardiac Cafe model having seeing the value of these and what they mean to heart families.

Working together
A big thank you to fellow heart charity Take Heart for supporting the family of a baby on Ward L51 with accommodation. When Mum was told that Dad could no longer use the room due to them been transferred to the main ward, Mum was very upset as Dad had stood by her side since the birth and Mum was finding the thought of being alone overwhelming.

Mum had struggled to come to terms with what they had missed out on as a family since baby was born and the three of them being together at the hospital was the one thing she didn’t want to lose. The support of Take Heart meant that Mum could hold on to her little family when she needed it most and for that we are truly grateful.

Crafting & Connections
Wakefield Youth & SEN Cardiac Cafe

Last month we hosted a half term Cardiac Cafe in Wakefield. This event was targeted at Youth and families who had a child with additional needs.

We sat and did crafts – creating decorations and friendship bracelets for families on ward 51. Parents had a great time sharing their experiences and building peer connections over a brew.

The venue also had a playroom available for families with smaller children to play in a ‘normal’ environment.

The Family Support team attended the ward a total of 131 times this month, offering their tailored support to families.

This support has included completing grant applications, supporting with DLA and providing well being materials and activities.

These visits are also essential when a family is not present. The Family Support team have left leaflets and information for families to read when they have the time.

How is Family Support making a tangible difference to families?

Birthday photos
This month CHSF provided a long term inpatient family with a photo session for their child’s 1st birthday. This was such a positive experience for the family and provided them with photos they will cherish.

Sibling activity
We provided a long term inpatient family with a bowling trip. This gave mum the opportunity to step away from the ward and spend some quality time with her older child, helping maintain family relationships.

Emergency hospital transfer
A family was transferred as an emergency from Bradford Royal Infirmary (BRI) to LGI. The Family Support team were able to liaise with the ward at BRI and arrange a taxi for the family’s belongings to be returned to them.

121 Youth Support
Lu has spent time on the wards offering 121 sessions for young people. This has included working with a young person to create Wear Red Day friendship bracelets for the team on the ward.

Transition Clinic
Transition Clinic happens every two weeks. Lu was able to attend and support a young person and her mum through navigating transitioning to a new school and signposting to other support services.

CHSF leading the way with our inclusive and tailored family support.

“I do apologise; I think I chose the wrong option when filling out the application form as we’re not on the ward.

“I’m not sure if we’re eligible for support from CHSF as we’re not from Leeds, however I still applied as options are so limited in Wales and I couldn’t find any charity that could help.”

Children’s Heart Surgery Fund is leading the way with an inclusive, tailored family support service that reaches far beyond traditional boundaries. While many charities are restricted by location, diagnosis stage or hospital admission, CHSF is recognised for meeting families where they are; wellbeing, practically and geographically.

The message from a family in Wales (above) powerfully illustrates just how unique this service is. Families are not simply accessing a grant or a one-off intervention; they are seeking the holistic, compassionate and specialist support that CHSF has become known for.

The fact that families turn to CHSF when they feel they have nowhere else to turn speaks volumes about the reputation, inclusivity and impact of the CHSF Family Support team

It’s only with the help of our incredible supporters that we can continue to be there for every family that needs us. Thank you.

Find out more about CHSF Family Support

We are extremely grateful to The Liz & Terry Bramall Foundation for their generous support over three years towards our Family Support Service.