“The ability to listen when you’re going through a hard time. Kindness in providing accommodation and vouchers when your child is in PICU or HDU. Empathising with your emotions and being a friendly face.

“The highlight for us was our child receiving a Katie bear and a certificate. It meant so much to him and he has loved bringing this home.” – heart mum

During the month of August…

14 referrals received for targeted Family Support
39 families engaged With
14 young people worked with and supported

Financial support in August…

5 new families received travel grants
3 wellbeing grants given
6 external grants given
30 Tesco vouchers given

Opportunities For Young People
Youth Day @ Lineham Farm

In August we took our CHSF Youth to Lineham Farm. This was a fantastic opportunity for young people to meet each other, build peer connections and gain new skills in a safe and friendly environment. Members of the medical team also came along to the day including Amy, the new dedicated Transition Nurse.

We also used the session to gain feedback from young people about what they would like to see from the service going forward. We had some fantastic suggestions from asking to do the same event again, to ideas for support while in hospital, and a request for an art based event.

Their feedback will directly influence the work we do with young people and we are excited to see how working collaboratively with the young people we support will impact what we do next.

Results Day

Results day is a big day in anyone’s calendar, and it’s an even more impressive milestone when you have been managing hospital appointments, admissions, medication and transitioning to the adult service.

Many of our young people received their grades this month for Alevels, BTEC, TLevel and GCSEs.

This included one young person who received her grades while staying on the adult ward. She received fantastic grades and a place in her desired college, as well as her fifth Katie Bear! To celebrate this milestone CHSF got her a Deliveroo Voucher and created a pamper pack for her while on the ward.

Results Day
Abi

‘‘Our heart warrior is truly amazing – we are beyond proud of everything she achieves and her never-give-up attitude! She’s proud of her scars and wears them like a badge of honour – we are so grateful that we were believed that something wasn’t quite right with her development! She received amazing treatment and skillful surgery, and she’s now mended!”

New experiences for long term inpatients

Having a child in hospital for a long period of time can create barriers to experiences which many of us may take for granted.

Parents can’t take their child to the park and push them on the swing because they have learnt to sit unaided. They cant access soft play when their child has found a sense of adventure and is starting to pull themselves up on furniture. They cant attend play groups when their child starts to clap along to ‘If you’re happy and you know it!’

CHSF can provide new opportunities for these families when they face a new reality they didn’t know existed.

We are working in partnership with Leeds City and Holbeck Children’s centre to provide a face to face ‘rhyme and play’ session for a family on Ward L51 to promote their 18 month old’s passion for singing. We hope he has the best time and we will be using his voice to ensure we form new connections with services to ensure that these opportunities are available for long term in-patients going forward.

Making Support More Inclusive with Mansi

In September we will be launching our new and more inclusive additions to the Comfort & Care packs for families staying wiht us on the wards. These will include Prayer Beads, Prayer Mats and Dua Affirmation Cards.

Mansi will also be rolling out our Halal treat hampers on wellbeing trolleys across Fetal clinic, Ward L51 and the adult ward We hope to update you all on the success of this in next months impact report!

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.

“Nice to have a chat with a friendly face offering financial and moral support” – parent on the ward

During the month of July…

20 referrals received for targeted Family Support
36 families engaged With
12 young people worked with and supported

Financial support in July…

5 new families received travel grants
3 wellbeing grants given
6 external grants given
39 Tesco vouchers given

Cardiac Cafe Barnsley

This month we hosted our Cardiac Cafe in Barnsley! We had three families join us at the Library @ The Lightbox, including one grandparent and one youth.

The morning was a lovely opportunity for the families to meet CHSF staff and each other.

chsf.org.uk/cardiac-cafe

Super Siblings

CHSF understands the impact of having a sibling in hospital.

When a patient’s big brother had to miss school to be at the hospital due to his baby sister being unstable, it was such a understandably difficult time for him. He also told the nurses he missed out on going on a trip to an ice cream parlour with his school friends.

CHSF knew what needed to be done and discussed an ice cream station treat on the ward for siblings. Sadly baby sister passed away before we were able to do this.

It is important that these small gestures are not forgotten and CHSF delivers on commitments made – we will be contacting the family following some breathing space to offer ice-creams and sweet treats for the whole family from the comfort of their home.

Accommodation

“The parent accommodation offers such value to our families not only financially but emotionally. We have witnessed some very poorly children in the hospital and there have been times when parents have received news that there child is deteriorating.

The closeness of the accommodation that CHSF offers means parents can be by their bedside without taking a 90 mile trip.

“Being there to hold your child’s hand when they need you, when you need them and when time is precious – is priceless” — Nurse, Leeds Congenital Heart Unit

Breaking down barriers

Our new Family Support Inclusion Worker Mansi has already shown the true benefit of her role this month.

During a shadow day on PICU we met a family who had been admitted as an emergency. Mum stated that she does not speak English, and speaks Urdu. Mansi who also speaks Urdu very quickly stepped in to communicate with Mum.

The basic need for clear communication and positive interaction with a person during a distressing time is invaluable. Through overcoming a language barrier we were able to give Mum the right support at the right time ensuring Mum felt heard and listened to.

This is what we hope for all parents/carers and patients we support at CHSF, and with the help of Mansi we can truly deliver on our commitment to families!

“It has been an exceptionally amazing month being a part of CHSF. As a Family Support Inclusion Worker, I have truly felt included and welcomed by the team. I’m looking forward to being part of more wonderful work in the future, supporting our beautiful families.” – Mansi

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.

Young heart patient Isabel has inspired a huge donation of £7,861 from Welcome Break Charitable Fund to Leeds-based Children’s Heart Surgery Fund (CHSF).

Isabel’s dad Kevin Morris works for Welcome Break as a Brand Excellence Coach, and he put CHSF’s name forwards to the Welcome Break Charitable Fund for a monetary award following the care his family have received at the Leeds Congenital Heart Unit (LCHU).

The donation will help to pay for key parts of CHSF’s Family Support service over a 12-month period. This will include family events giving opportunities for peer support amongst affected families, care and comfort packs for families of in-patients at Leeds, ward resources, arts and crafts, and the Katie Bear toys, medals and certificates every child patient receives after surgery.

Nicola Marshall, People Director at Welcome Break said:

“The Welcome Break Charitable Fund Community Grants are a testament to our commitment of supporting the communities we serve.

“We are delighted to see the positive impact these grants have on local organisations and are proud to support them to help them to continue the wonderful work that they do.
We encourage more community groups and charities to apply for our next round of funding in 2026 so that we can continue to make a meaningful difference together.”

Isabel was born 4 weeks premature in November 2013 with a range of serious and complex heart defects (Tetralogy of Fallot, Double Outlet Right Ventricle and Ventricular Septal Defect). She underwent a 4-hour open heart surgery at the LCHU at just three months old.

The family themselves have raised over £20,000 for CHSF since. Amongst other activities, mum Natalie has managed regular event stalls, Kevin runs the Sheffield Half Marathon every year for CHSF and Isabel has fundraised through charity walks and more recently her school’s colour run.

As well as having congenital heart disease, Isabel is also Autistic with Sensory Processing Disorder and Global Delay, but Kevin says her daughter is always on the move.

Mr Morris said:

“Currently Isabel is keeping further surgery at bay by being very active and having lots of energy. We’ve been told several times of this wasn’t the case she’d have needed surgery by now. So all these charity walks are paying off!

“I was more than happy to nominate CHSF for a grant award from Welcome Break Charitable Fund, as the charity needs financial help to deliver the family support services and NHS resources that we experienced.

“What inspires us to help as a family after all these years of fundraising is that Isabel will once again need more surgery and that we will once again need to rely on having accommodation to be close to Isabel during her hospital stay, and the other support provided by CHSF.”

As the Morris family are from Creswell in North Derbyshire, the parent accommodation which CHSF provide at Leeds was hugely beneficial to the family while Isabel was treated.

CHSF’s Family Support Service also offer tailored wellbeing, financial and practical support for families during their child’s hospitalisation, and the charity provide life-saving medical equipment, ward resources, staff training, scientific research and new clinical roles across the region.

Ruth Davany, CEO of Children’s Heart Surgery Fund, said:

“This generous donation from the Welcome Break Charitable Fund means so much to us – and to the families we support.

“Isabel’s journey is a powerful reminder of why our Family Support service exists, and we’re incredibly touched that her story has inspired this gift.

“We’re deeply thankful to Kevin and the Morris family for their amazing fundraising, and everyone at Welcome Break for helping us be there for families when they need us most.”

Does your workplace have a charitable foundation?

We’d love it if you could nominate us to receive a donation. Let us know at info@chsf.org.uk

Thanks to your donations, we have just released a new animated video explaining the Fontan circulation and how patients with single ventricle heart defects are typically treated.

This video was created in collaboration with specialists from the Leeds Congenital Heart Unit, and our colleagues at Feature Media.

In a normal heart, blood flows in a circuit. The right ventricle pumps deoxygenated (‘blue’) blood to the lungs, where it picks up oxygen, and then the oxygenated (‘red’) blood returns to the left ventricle, which pumps it out to the body.

Here is an animation showing the normal heart:

In single ventricle conditions, part of the heart is underdeveloped, so a series of operations are required to ensure the body gets enough oxygen.

These operations result in “The Fontan Circulation”. This video shows the Fontan circulation in more detail:

Please note that this video illustrates the Fontan Circulation very simply and not all single ventricle conditions are the same, therefore some patients may have had/need different operations/treatment.

The aim of the Fontan operation is to separate the blood to ensure that only blue blood goes to the lungs and red blood is pumped to the body. This is done by connecting the veins that carry blood that is low in oxygen from the body directly to the lungs where it picks up oxygen. Blood that is full of oxygen then goes to the heart and is pumped to the body.

Patients with a Fontan circulation require lifelong monitoring and management by healthcare professionals. This includes regular check-ups, imaging, and interventions as needed to address potential complications.

The procedure gets its name having been initially performed in 1968 by Francis Fontan and Eugene Baudet from Bordeaux in France. The operations are usually carried out between the ages of a few months old to around 5 years of age.

Hannah Swift, Adult Congenital Heart Disease Nurse Specialist, said:

“Sometimes it can be hard to explain the different heart conditions to patients and families, so these videos provide a simple, visual aid to help ensure people understand their heart conditions. We also use them for training and education of staff members all over the region.

“The Fontan Circulation can be particularly difficult to understand so we were keen to develop a new video with Feature Media and thanks to CHSF and its supporters we have been able to… Thank you!”

Because of You, CHSF have been able to fund a range of other CHD videos covering a range of common congenital heart defects and treatments.

More animations

Please note: Children’s Heart Surgery Fund is not a medical resource and cannot provide medical advice.

Heart conditions are very individual and what can be right for one person could potentially be dangerous for another. If you have any questions about yours or your child’s condition, please get in touch with Leeds Congenital Heart Unit directly, or the specialist nurses.

www.leedsth.nhs.uk/services/congenital-heart-unit has lots of information, and is a great place to start

Children’s Cardiac Nurse Specialists
ccns.lgi@nhs.net
0113 3925467
(Please leave a voicemail, your child’s date of birth, their NHS Number if you have it, and your telephone number)

Adult Cardiac Nurse Specialists
leedsth-tr.achdnurse@nhs.net
0113 3928154
(Please leave a voicemail, your date of birth, your NHS number if you have it and your telephone number)

Ms Carin van Doorn (Consultant Congenital Cardiac Surgeon at Leeds Children’s Hospital and CHSF Charity Trustee) has been awarded Order of the British Empire (OBE) in the King’s Birthday Honours list.

Carin is recognised for her enormous contribution to children’s heart surgery both in the UK and overseas including extensive charity work, over the course of a distinguished career.

Born in the Netherlands, Carin trained as a cardiac surgeon here in Yorkshire before specialising in Congenital Heart Surgery at Great Ormond Street Hospital in London and Birmingham Children’s Hospital. Carin has worked at Leeds Children’s Hospital permanently since 2013, where she has led the Congenital Cardiac Surgery Team, operating on thousands of children and young people affected by congenital heart disease.

Under her leadership the service in Leeds expanded its program for complex neonatal cardiac surgery and also became one of the largest UK programs for adult congenital heart surgery. As a senior surgeon, trainer and lecturer Carin is known for supporting for her colleagues and members of the wider multidisciplinary team. Carin has also held various national roles in the field of Congenital Cardiac Surgery, championing innovation and improved outcomes for children and young people.

Carin’s OBE also recognises her extensive charity work in the UK and overseas. She is a long-standing trustee of Children’s Heart Surgery Fund (CHSF) who support families affected by congenital heart disease with a holistic family support service including parent accommodation, as well as providing support to the Leeds Congenital Heart Unit through medical equipment, ward facilities, NHS roles and research.

“We are incredibly proud to see Carin honoured with an OBE. Her dedication to saving children’s lives through heart surgery goes far beyond her expertise in the operating theatre – it’s her kindness, passion and tireless commitment that make such a difference to families facing incredibly tough challenges. Carin embodies our vision at Children’s Heart Surgery Fund – empowered lives for everyone born with heart disease in our region – and this recognition is so well deserved.”

– Ruth Davany (CEO of CHSF)

Carin has also led numerous surgical missions for the Chain of Hope charity, performing cardiac surgery for paediatric patients in less developed countries. As a surgical trainer and educator for the Magdi Yacoub Foundation she helped establish the Aswan Heart Centre in Egypt.

Following the announcement at the weekend on hospital and charity social media channels, hundreds of patients and families have commented to share their congratulations and thanks with Carin. Many have shared their personal experiences and how Carin’s work has impacted on their lives, including families supported by Children’s Heart Surgery Fund.

Congratulations to the one and only Carin Van Doorn!

Thank you for all that you do for Children’s Heart Surgery Fund, our life-saving heart unit in Leeds, our patients and families. #BecauseOfYou

Donate

Children’s Heart Surgery Fund (CHSF) have awarded a further grant of £15,000 towards Eckersley House, a ‘Home from Home’ run by The Sick Children’s Trust for parents with a seriously ill child in hospital.

Since being relocated next to the Leeds Children’s Hospital in 2010, Eckersley House has been a base for thousands of families needing overnight stays and a place to rest near their poorly child.

CHSF have given over half a million pounds to Eckersley over the years, thanks to the generous fundraising of their charity supporters.

Jane McHale, House Manager of Eckersley House, said:

“We are incredibly grateful to the Children’s Heart Surgery Fund for their wonderfully generous grant of £15,000. This support will make a huge difference to the families who rely on Eckersley House while their children are receiving critical care at Leeds Children’s Hospital, and we cannot thank CHSF enough for their continued support.

“For the past 15 years, CHSF has been an incredible partner, providing more than £500,000 in funding to help us support families of children with serious heart conditions being treated at Leeds Children’s Hospital, guiding parents and guardians through some of the most difficult times in their lives.

“With the cost of running our ‘Home from Home’ continuing to rise, this funding ensures we can keep providing families with a warm, comfortable place to stay, just moments from their child’s hospital bedside. Once again, a huge thank you to CHSF for their ongoing generosity and for helping us to keep families together when they need it most.”

CHSF are incredibly grateful to the amazing team at Eckersley House who look after the Leeds ‘home-from’home’ and our heart families so well.

Last year, CHSF were able to offer a place to stay to around 300 families at Eckersley House and in their own rooms in Brotherton Wing, enabling worried mums and dads a place to recuperate just minutes from their child’s bedside.

Eckersley House offers 22 family bedrooms (linked directly to the wards by telephone) and three shared living areas, one on each floor, comprising a large kitchen, living room and play area, plus full laundry facilities.

Many families who take benefit from the ‘Home from Home’ have children admitted to Leeds Children’s Hospital with serious cardiac conditions or other life-threatening illnesses.

Over the last 12 months, families have stayed an average of 21 nights at Eckersley House, and recent survey data confirms that families would have struggled to cope and support their child without it.

They include heart hero Louie Jollands from Bottesford in North Lincolnshire.

Louie needed open heart surgery at just four days old, and mum Jess and dad Callum were very grateful for the accommodation. Jess said:

“CHSF made an impossible time just that little bit more bearable – offering accommodation, food vouchers, gift hampers, and something so simple yet powerful: a friendly face when we needed it most.

“We stayed in both Brotherton Wing and Eckersley House, which meant we could be close to Louie during the most critical moments. Being far from home, this also lifted a huge financial burden off our shoulders – we didn’t have to worry about where we’d sleep or how we’d afford it. It allowed us to focus on what mattered most: being there for our son.”

Ruth Davany, CHSF CEO said:

“We are thrilled to be able to continue our annual grant towards the fabulous accommodation at Eckersley House, and work with our lovely colleagues at The Sick Children‘s Trust to provide essential facilities for worried parents.

“We know how important safe and comfortable accommodation close to the hospital is for parents. Eckersley Houses offers families a place to sleep, freshen up and make a meal so that they can continue to be with their child during hospital stays.”

“CHSF’s aim is to ensure everyone affected by congenital heart disease in our region has greater control and choices, and since the charity began in 1988, suitable parent accommodation remains one of our biggest priorities.”

CHSF run a holistic family support service which offers tailored care packages of practical, financial and wellbeing support, which often includes the offer of family accommodation to families who live many miles away from Leeds.

The charity also provides essential resources for the Leeds Congenital Heart Unit, and 19 regional clinics, across its geographical remit of Yorkshire, the Humber, North East Lincolnshire and North Derbyshire.

Around 1 in 125 babies are born with heart disease in our region. Make a donation so CHSF can keep being there for families in our region.

Donate now

“This month we have reflected on connections. We tend to focus on positive outcomes in terms of a successful surgery, a family going home after a long admission or the speedy recovery of a patient – but we sometimes forget those small wins and bonds formed through CHD and CHSF.

“Connections are empowering and CHSF are at the heart of this” — Sarah Cherry, Head of Family Support

Family support in numbers

20 families received targeted family support
(11 of those families were new families for April)
A further 20 families engaged with the Family Support team
11 young people engaged with through the month

Financial Support In Numbers

25 families received travel grants
13 external financial grants completed
20 Tesco vouchers given
2 exceptional grants given
2 wellbeing grants given

8 Comfort & Care packs

given out to families on the ward

Cardiac Cafe Bradford

“Had an amazing time. My Son loved every moment. It was great to come out of the house and meet people. My son enjoyed and played with every toy. The staff are lovely and great to be around. Will be coming to more events like this”

This month we hosted our Bradford Cardiac Café. This was at the Bradford West Family Hub. We were joined by Araminta, the Bradford Congenital Cardiac Nurse Specialist (CCNS), and Zoe, one of the support team from Martin House.

Six families attended the event including two young people, one bereaved family, five mums and two dads. This month’s event highlighted the importance of peer connections within the diverse community families we support. With parents feeling comfortable chatting to each other and sharing their heart journeys.

Find out more about Cardiac Cafe’s here

Support for long-term families

Connections

This month we have witnessed the positive connections made within the hospital, at a time of stress and isolation parents and patients come together through their shared experiences to support one and other in times of need.

We have seen first hand the power of these connections – from a parent taking a struggling new mum for a time out from the hospital, babies and children showing their determination, making new friends and forming close bonds, and a bereaved Mum contacting the charity to ask how they can stay close to CHSF and help others.

“This is the only place where people understand what I am going through, I come to Leeds, and I feel safe” Heart Mum You were the face of our journey; it is important I support you to carry on and to help my sons legacy continue” — bereaved heart mum

“Being in hospital away from family and friends can be scary but lonely, CHSF makes this journey so much easier always being that friendly face to make a bad day that little bit better.”

“They understand that parents are in shock. They asked how they can help you. They were kind and they didn’t let us feel at anytime that we are burdening them.”

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.

Make a donation

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

In April 2025, as well as the incredible day-to-day support from our Family Support team, we’re shining a light on our youth support work and the care given to families staying with us long-term on the ward.