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.

During the month of January…

• 46 families worked with overall

• 28 families received a tailored packaged of Family Support

• 18 families engaged with

  —

• 4 young people and their families worked with and supported

• 12 Travel Grants given
• 7 attended Cardiac Cafe
• 25 Supermarket Vouchers given
• 5 Exceptional Grants given

New beginnings: Support for neonates

January is full of new beginnings. A brand new year and precious new arrivals of our littlest heart warriors on the neonatal ward (L43), the family support team delivered 8 Comfort and Care packs to celebrate our newest parents and welcome them into the CHSF family network.

The CHSF wellbeing trolley headed to Neonates to offer a hot-drink, sweet treats and some beautiful baby books and bonding squares to our newest arrivals in Leeds General Infirmary.

The Family Support team were able to deliver 100 tailored conversations with families to asses their needs during their stay in hospital.

These conversations are not measured in time, but in quality of the support delivered. Families have the opportunity to have a listening ear, speak openly about their needs and receive a service tailored to their specific situation. From a brew to an external referral, the family support team are able to deliver what is right for each family at the time that works best for them.

Wellbeing for everyone

Just some of the ways we’ve supported wellbeing this month…

Baby Bouncer

Purchased a baby bouncer for an in-patient on Ward L51 to support a low income family, this provided opportunities for baby to spend time out of their cot and give parents those rare and important moments of normality whilst being in hospital.

Hospice visit

Provided exceptional travel for a parent to visit a children’s hospice. This enabled Mum to have a look around, help diminish any fears and begin to build trusted relationships with the team to promote future support opportunities for her baby and wider family network.

Self-care voucher for mum

Provided a self-care voucher for a parent on the Neonatal ward to encourage Mum to take some time for herself to meet her own wellbeing needs while her bbaby is in hospital.

How is Family Support making a tangible difference to families?

Provided headphones
A parent on the ward wanted some headphones to escape the loud noises and focus on her audio book. CHSF was able to provide this to give a sense of normality and wellbeing for this family.

External grant referral
Family Support were able to complete a referral for a grant that enabled a family to navigate the cost of their stay in hospital, relieving their financial burden.

Over the phone support
The Family Support team were able to provide follow up phone calls after families had been discharged. This let families know the charity is still here for them, and led to further support for the families in the community.

Wellbeing for long-term families
This month the Family Support team were able to provide support to long-term inpatient families. This has included a gym membership, a trip to a spa and takeaway vouchers.
Giving families who have been in hospital for over 100 days the opportunity to take some time for themselves and prioritise their own wellbeing.

Building Lego = Building Wellbeing
A young patient on Ward L51 has been getting creative thanks to Lu and her weekly Lego delivery. This heart warrior is so proud of her collection, and we are proud of her too!

Expanding our support

One region. One network. One cause.
CHSF had a great meeting with the Cardiac Nurse Specialists across the region this month. We talked all things family, events and promoting the support we offer.

Adult Wellbeing Box
In 2026 we have introduced a wellbeing box for patients and visitors on ward L16. This includes some snacks, crafts and well being resources for older patients and their families.

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.

During the month of December…

• 38 referrals received for targeted Family Support

• 39 families engaged with

• 11 young people and their families worked with and supported

337 families supported in 2025

As we look back on the year, we reflect with pride on what the Family Support Team has achieved and the impact this has had for the families we support.

At the same time, we pause to remember the families who have lost their heart warriors this year. They are always in our thoughts and will be forever remembered by the CHSF team.

We look ahead to another year being there for our heart families – only possible because of you.

Wreath Making workshop

This month, we were delighted to host a festive wreath-making workshop for parents of heart patients and adult patients alike.

We welcomed families from both the ward and the wider community, creating a lovely space for everyone to come together.

As well as enjoying a seasonal craft, families had the chance to share their stories, build connections, and take a moment for themselves. For parents on the ward, it offered a break; for others, an opportunity to meet those a little further along in their heart journey.

And the best part? Every wreath was beautifully unique!

Thank you

“We want to say a huge thank you to all our supporters and the amazing CHSF team. Without our incredible Finance, Marketing and Fundraising teams, the Family Support Team wouldn’t be able to do what we do every day.” — Sarah, Lu & Mansi, 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.

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

“That was the best night sleep I had in weeks! You don’t realise it, but having those beds there when I needed it was amazing”” – heart dad – about CHSF-funded parent rooms

During the month of November…

• 24 referrals received for targeted Family Support

• 12 families engaged with

• 11 young people and their families worked with and supported

Financial support in November…

• 10 new families received travel grants

• 9 families signposted to other services

• 12 comfort and care packs given

• 23 Tesco vouchers given

We were delighted to connect with the Asian Association of Chesterfield & North Derbyshire. Their commitment to diversity and community support is truly inspiring.

They have kindly offered us the use of their vibrant, family-friendly space for our Cardiac Cafe. Our meeting highlighted their warm, collaborative spirit and their willingness to support us in multiple ways. We look forward to developing this partnership in the future.

Cardiac Cafe at The Place2Be

This month we hosted our first Inpatient Cardiac Café on the ward and what a lovely afternoon it was! Families joined us for sweet treats, teas and coffees, with support from our family support team, joined by the fantastic Cardiac Nurse Specialists. One sibling even got stuck into some wellbeing colouring while their mum enjoyed a much needed brew and a cake.

We’re so pleased to be offering moments like this, giving families a chance to step off the ward and look after their own wellbeing.

Creating these small pockets of calm means so much to the families we support. A Heart Dad told us: “It’s fantastic!  just to get some time away and break up the day. It gives us something to do and a chance to have a real chat.”

We’re hoping to bring more Inpatient Cardiac Cafés to the ward soon, especially for those who can’t attend our community events.

Youth Hub round-up by Lucy McMahon

Our Youth Hub event saw fantastic engagement this month, with young people with CHD coming together to have fun, make memories, and build the kind of peer connections that can be difficult to find elsewhere.

Feedback highlighted just how valued these spaces are, moments where young people can be themselves, try new activities, and feel surrounded by others who truly understand their experiences. The photos captured the spirit of the evening perfectly: joy, confidence, and a genuine sense of connection.

Youth: In the Community

I supported one family in completing their PIP form and offered a listening ear to a parent of a CHD teenager. These conversations and practical support continue to build trust, connection, and consistent support for families wherever they are in their CHD journey.

Youth: On the Wards

I supported two young people who were long-term inpatients, offering painting, crafting, and games sessions to break up long hospital days. One young person received resources to help him prepare for his GCSE mock exams, ensuring he could stay connected to his education even while in 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.

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

“I was most supported whilst we were in hospital and I was away from all my family alone. I remember having visits at the side of the bed and a friendly face to talk to as well as wellbeing trolleys etc!”” – heart mum

During the month of October…

• 12 referrals received for targeted Family Support

• 31 families engaged with

• 14 young people and their families worked with and supported

Financial support in October…

• 7 new families received travel grants

• 2 wellbeing grant given

• 7 external grants given

• 30 Tesco vouchers given

Our Family Support Inclusion Worker Mansi Daas had a lovely meeting with the Chaplaincy team to explore future collaborations and working together to tailor support for each family’s unique needs. She also enjoyed a lovely Diwali celebration!

” It was a pleasure for me as a Family Support inclusion worker to join the Chaplaincy Team for a beautiful Diwali celebration! ✨

We were warmly welcomed, and what started as a meeting turned into a joyful celebration. It is a true reflection of future collaboration and community spirit.

The atmosphere was filled with togetherness, lovely prayers, and delicious food. I felt deeply included meeting people from diverse backgrounds and celebrating the rich tapestry of cultures that make our communities so special.”

Halifax Cardiac Cafe

We had a great day in Halifax for this months Cardiac cafe, it was great to catch up with little Florence Dottie and her parents – Florence spent 80 days in hospital when she was born and parents were so very grateful for the support from CHSF.

We spoke about how different the journey is with a newborn in hospital and how much you take for granted when you have a healthy child with Dad stating how during that time he was only able to cuddle Florence 6 times, in the early days this should be a number you lose track of.

Parents commented on how much the family support meant not only to them but their wider family and support networks.

Youth Hub round-up

“Wow – what a month! Spooky season has been full of energy, creativity, and connection for our CHSF young people. Here’s what’s been happening…” – Lu, CHSF Youth Worker

Youth Event: Paint & Sip Night

We kicked off the new academic year with our first youth event Paint & Sip! Young people spent a relaxing evening painting, sipping mocktails, and chatting with others who “get it.” Special thanks to Amy, our Transition Nurse from the Leeds Congenital Heart Unit, who wowed everyone with her artistic flair!

Youth Voice

A huge shoutout to Toby and Arabiya, who created brilliant video presentations for the Board of Trustees! They both shared their personal experiences of living with CHD and their ideas for shaping the future of our Youth Hub. We’re so proud of their confidence and insight.

On the Wards

Both Ward 51 and Ward 16 have been busy this month, with several young people spending time there.

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.

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

Mansi Dass joined Children’s Heart Surgery Fund as Family Inclusion Worker in late June.

Here’s an update from CHSF’s Head of Family Support, Sarah Cherry on how Mansi is dedicating her time to promoting inclusion, celebrating cultures and raising awareness to bridge gaps in the support the charity delivers.

“Mansi has already achieved so much in the short time she has been at CHSF, from providing positive communication with families on the ward by overcoming language barriers, to supporting the launch of a “Comfort and Prayer” pack which will be available to our Muslim families whilst in hospital.

“During a shadow day on the paediatric intensive care unit (PICU) we met a family who had been admitted as an emergency from their local hospital.

“Mum is alone in Leeds while Dad is at home tending to other family commitments and responsibilities. From the initial greeting Mum stated that she does not speak English and speaks Urdu.

“Mansi also speaks Urdu and stepped in very quickly to communicate with Mum, introducing our service, the reason for our visit and the many ways we can help make the family feel comfortable and supported during their hospital admission.

“I stood back and watched this interaction and witnessed the colour flush back into Mum’s face as she smiled and relaxed in her chair whilst holding her little girl in her arms.

“A basic need for clear communication and positive human interaction during a distressing time was clearly invaluable to this Mum, who was a long way from home without family or familiarity. Through overcoming the language barrier we were able to give the right support at the right time, ensuring Mum felt heard and listened to.

“This is what we hope for the parents/carers and patients we support at CHSF, and with the help of our new Family Support Inclusion Worker we will deliver on our commitment to all families.”

Our new ‘Comfort and Prayer packs’ contain:

• A pocket prayer mat
• Prayer beads
• A Love and Dua card
• 2 sachets of Chai

We are excited to see where Mansi’s role will lead, and the outcomes Family Support will achieve as a team. Mansi will be looking at rolling out our Comfort & Prayer packs for other faiths too. Along with delivering support on the wards, Mansi will be meeting families to capture the voice of the patient and parent.

This will help us to shape the support CHSF offers, and plan Cardiac Cafes and events – bringing communities together through their shared and lived experiences.

Mansi said: “It’s an honour to celebrate cultures and promote diversity with CHSF. Inclusion begins with connection. I am passionate about walking alongside families on their journey to ensure they have the right support to thrive. I will work with my team to build bridges that strengthen families and communities.”

More about CHSF’s Family Support including who’s who in the team, resources for families and how to request support 

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