With thanks to Albert’s mum, Ellie, for sharing their family’s experiences with us.

“Our experience of congenital heart disease began at our 20-week pregnancy scan, where our son was diagnosed with Tetralogy of Fallot (ToF).

“This was an incredibly overwhelming and frightening time, particularly as we faced a long wait for the results of an amniocentesis for further genetic testing, which thankfully came back clear.

“Throughout the pregnancy, we attended numerous scans and appointments to monitor his condition and prepare for his arrival. Following his birth, Albert required a 10-day hospital admission and underwent a stent procedure at four days old.

“We attended clinic appointments every four weeks until he was seven months old. This was when Albert underwent open heart surgery.

“Unfortunately, his recovery was complicated by both bacterial and viral chest infections, and he became extremely unwell – making it a very touch and go and frightening time for our family.

“Albert spent two and a half weeks in intensive care before being transferred to Ward L51, where he remained for a further four weeks before he was finally well enough to come home.

“The entire journey was incredibly challenging, emotionally and physically, but we will always be grateful to the medical teams who cared for him and helped him through such a difficult start to life.

“Throughout our journey, Children’s Heart Surgery Fund helped us feel seen, heard and cared for during what was an incredibly frightening and overwhelming time for our family.

“The support CHSF provided made such a difference – particularly during the long hospital stays when we were navigating so much uncertainty and worry.

“Having access to accommodation and food vouchers helped ease some of the practical and financial pressures, allowing us to focus on being there for our son when he needed us most.

“The wellbeing support was also invaluable, reminding us that our own emotional wellbeing mattered too.

“Children’s Heart Surgery Fund helped us feel less alone throughout the journey, and we will always be grateful for the kindness, understanding and support they showed our family.”

“Thank you so much for meeting us in clinic. we really appreciated the chat and the goodie bag. You calmed us all down” — heart mum

52 families supported in September

27 families received a tailored package of Family Support
24 families engaged with
12 travel grants given
27 supermarket vouchers given
116 visits to the ward
5 one to one Youth Work sessions
9 Comfort & Care packs given
45 received Wellbeing Support

Support at every stage

Baby essentials delivery

This month the Family Support team visited PICU’s Breastfeeding Room, the neonatal ward and Eckersley house to deliver bundles of baby wipes and baby bath wash to new parents.

New Comfort and Prayer packs ready to launch

We worked closely with the Muslim chaplaincy team to create our new Comfort and Prayer packs – to make sure we get them just right for what families need.
The Muslim chaplain will also be supporting CHSF to develop posters in Urdu and Punjabi which will enable families to request packs when needed.

Study packs

September saw the start of a new school year and for some young people that fell while they were in hospital. CHSF have provided Study Packs to teenagers on the ward, making sure they have everything they need to continue to do school work and revise as needed.

Family stories and messages

Four months of support in hospital

We spent four months supporting the family of a newborn in the hospital – from meeting the family on the neonatal ward hours after he was born, to saying goodbye to them on Ward 51 hours before they were discharged. Every step the family took during their hospital journey the CHSF Family Support team were there to walk beside them.

Some examples of how we helped: providing a grant to Dad so he could travel to take care of home life and older sibling; giving weekly food vouchers to encourage Mum to take time away to eat, refuel and meet her own needs; offering mindfulness resources and essential toiletries; making plans to ensure big sister felt involved and cared for; and being a present and familiar face to Mum during the long isolating days on the ward. CHSF were a constant source of support.

When a family has no control over the big things, we support them to plan and control what they can. This support plan is more than a grant and a smile – for some it’s a lifeline.

On the day of discharge Mum had some wonderful feedback to share:

“The travel was amazing, but the constant drop-ins have helped so much. Whether i was happy or sad you would give your time and a personal touch to the support we had. Even as a whole family – offering ideas to help when i hadn’t seen my daughter and she was struggling. You really bridge the gap between the medical and personal side of being in hospital I can’t think of anything that was missing. You have been amazing”

Teamwork makes the dream work

“Good morning, Sarah, just to let you know we’ve been discharged and we are home now and would love to say a big thank you to all the members of your team for all your care and support all through our stay in the hospital, once again we appreciate you all, thank you” – message from a heart dad

In a world of constant change and sudden storms, a familiar face can be an anchor

Following a long-term hospital admission and spending months on the children’s heart ward, one of our families was transferred to another ward in Leeds Children’s Hospital – still under Cardiac Care but receiving support for other health needs.

On Ward 51, the family received a full package of tailored support and regular check in’s from Children’s Heart Surgery Fund. They had Family Support visits, a Katie Bear delivery and many Wellbeing Wednesday’s. With a whole new ward to get settled into, a new routine and new faces to build trust with, the family struggled with the change.

We visited the family on their new ward to let them know that Children’s Heart Surgery Fund were still here for them and we delivered a bag of activities and Comfort and Care items. Mum was overcome with emotion. She told Head of Family Support Sarah that they were happy tears and said how nice it was to see somebody familiar.

“The kindness and the little things mean so much to us, the support has been great” – heart mum

CHSF offers belonging, community and understanding

“I have been told that we cannot go home yet. I told the nurse I needed to make a phone call and the only person I wanted to ring was you. I thought I need to tell her what I am struggling with because you will understand, many people don’t like to get involved. I am on my own and you treat me like family, you are always there for me

“I will always pray for your family, I wish you all good health and happiness. You always give me the strength I need, and I will forever be grateful to you and the charity. Even the girls that came with the drinks and snacks on the ward (wellbeing trolley) the kindness is amazing and makes me feel less alone.” – message from a mum to Sarah, Head of Family Support

Colin is Grandad to heart warrior Ezmé-Rae who had open heart surgery at the Leeds Congenital Heart Unit (LCHU) three years ago.

Colin wanted to give back in thanks for the amazing support his son and family received whilst in hospital so chose to do something big and climb a mountain to raise money for Children’s Heart Surgery Fund!

Colin says that because of the wonderful Mr Giuseppe Pelella and team at LCHU, he gets his Saturday morning breakfasts with his beautiful granddaughter.

Colin said:

“We took on Mount Toubkal which is the tallest peak in North Africa. But this was about so much more than just reaching the summit. From the early start in Marrakech and the gruelling push to base camp, to setting off at 3:00am in the pitch black to catch the sunrise at the top. You definitely question your sanity on these mountains, but moments like that make it all worth it.

“The biggest victory though is why we did this. We took on this challenge for Children’s Heart Surgery Fund and thanks to the unbelievable generosity from everyone back in my local village of Conisbrough and beyond, together we’ve raised an incredible £7,230!️

“A special thank you to Conner Kelsall who supported me with social media and spreading awareness of the challenge, and a massive thank you to every single person who donated and supported the cause. And to Marc, Derick, Kev Roberts, and James Lodge – I wouldn’t want to climb mountains with anyone else. We did it!”

Once they were back in the UK, Colin and his trekking team held a celebration event for friends and family to announce the incredible total raised for CHSF! The event was held in The White Lady in Conisbrough, where Colin enjoys his breakfasts with Ezme-Mae.

Community & Events Fundraiser Lauren went along to the event say a big thank you for all their amazing fundraising.

Lauren said:

“It’s been a pleasure to get to know Colin and see his determination get him through to complete this challenge! He has an amazing support-system around him with family, friends and locals who were fantastic in helping him smash his original fundraising target. It was a pleasure to attend his celebration evening and present him with his cheque.”

Caddick has donated £10,000 to Children’s Heart Surgery Fund (CHSF), the dedicated charity supporting the Leeds Congenital Heart Unit (LCHU) at Leeds General Infirmary.

Since the partnership with CHSF began, Caddick has donated a total of £183,620. This significant donation will directly support CHSF’s Family Support team, helping families navigate the emotional and practical challenges that often accompany a congenital heart disease diagnosis.

Children’s Heart Surgery Fund knows that caring for people with congenital heart disease involves more than treating the heart itself. Families often face long hospital stays, financial pressures, uncertainty, and emotional strain. That’s why, in 2021, CHSF established its dedicated Family Support team. The service was made possible with the help of funding from long-term charity supporter, Caddick.

Led by Sarah Cherry, Head of Family Support, the team provides tailored emotional and practical support to heart patients and their families at every stage of their journey, ensuring nobody has to face the challenges of congenital heart disease alone.

Speaking about the difference Sarah’s support made during an incredibly difficult time, one mum recently shared:

“I was told we could not go home yet. The first thing I did was tell the nurse I needed to make a phone call and the only person I wanted to ring was you. I knew I could tell you what I was struggling with because you understand. Many people don’t like to get involved, and I am on my own. But you treat me like family. You are always there for me.”

After Sarah stepped in with a tailored package of emotional and practical support, the mum later reached out again with a message that demonstrates the life-changing impact of the CHSF Family Support team:

“You give me the strength I need, and I will forever be grateful to you and the charity. Even the team who bring the drinks and snacks to the ward on the wellbeing trolley, their kindness is amazing. It makes me feel so much less alone.”

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

“Families facing congenital heart disease often find themselves navigating some of the toughest moments of their lives, and having someone there to listen, guide and support them can make all the difference. Moments like these are only possible because of partners like Caddick. Since our partnership began, Caddick has raised and donated an incredible £183,620 to Children’s Heart Surgery Fund. Their generosity has helped us provide practical, emotional and financial support to countless heart families across Yorkshire and beyond.”

Caddick’s support has also played a vital role in funding a dedicated Speech and Language Therapist (SLT) for cardiac patients at Leeds Congenital Heart Unit.

Around 60% of children who undergo cardiac surgery can experience swallowing difficulties, creating challenges with feeding, drinking and nutrition. These difficulties can affect growth and development, making specialist support crucial during a child’s recovery.

Since joining the team, Speech and Language Therapist Jess has made a significant difference to babies and children on the heart ward. The impact of the role means patients can often be assessed on the same day, ensuring families receive earlier support and intervention when it matters most.

Having a dedicated SLT post has also helped the cardiac unit meet NHS England’s Standards for Cardiac Care 88% of the time, demonstrating the value of specialist support within the multidisciplinary team.

One mum said:

“The funding has helped support so many families like mine, including some who don’t have a voice, and has given children the time and support they deserve to be able to eat and drink.”

We are pleased to say that, due to the impact of Jess’s role, the NHS has now taken on funding for this position, ensuring this vital support continues to be available for heart patients and their families.

Children’s Heart Surgery Fund (CHSF) would like to extend a special thank you to Kairen Brown, Head of Corporate Social Responsibility at Caddick.

Kairen said:

“As a Yorkshire based company, we love supporting the essential work and care that Children’s Heart Surgery Fund carry out at Leeds Congenital Heart Unit. We are proud to be corporate partners and are committed to providing for the charity in various ways to raise vital funds.”

Around 1 in 125 babies are born with heart disease in our region. To support CHSF with a donation, visit chsf.org.uk/donate.

“I really appreciate you and your team. Your kind work helped us when we were in hospital. You showed us so much kindness” — heart mum

41 families supported in August

21 families received a tailored package of Family Support
18 families engaged with
9 travel grants given
26 supermarket vouchers given
7 one to one Youth Work sessions
7 attended Cardiac Cafe

Youth Day

This month, we welcomed five young people with congenital heart disease to our summer Youth Event at Catch Farm in Harehills Leeds – for a day of connection, fun and trying something completely new.

Together, we swept up goat poo, held guinea pigs, stepped outside our comfort zones and learned new things. And, of course, we got to meet the alpacas!

The young people told us:

“Today was really fun.”
“I liked holding the guinea pigs. We don’t have pets, so that was great.”
“Meeting the other girls and the team was the best part.”
“I liked lunchtime.”

While these moments might seem simple, they can have a huge impact. For young people living with congenital heart disease (CHD), events like this are a chance to realise they are not alone. They can meet others who understand what it is like to live with a heart condition, build friendships and create positive memories together.

Just as importantly, it gives them the opportunity to meet the CHSF and hospital team outside of a medical environment.

It gives our young people the confidence to try something new, the opportunity to connect with others and a space where they can simply be themselves.

Cardiac Cafes

In August, we hosted three Cardiac Cafés – two in hospital and one in Scarborough – and we were delighted to see such a fantastic turnout at each one.

Scarborough

Our community cafe in Scarborough brought together 11 families, creating a relaxed space where families could connect over a brew and a pastry. For children living with congenital heart disease, it was an opportunity to meet other heart warriors and play together.

For siblings, the café offered the chance to meet other brothers and sisters who simply ‘get it’ without having to explain their experiences, or why life can sometimes be different.

We were also joined at this cafe by an adult heart warrior and his family, which was a particular highlight. Seeing an adult living well with CHD offers families hope for the future and a real-life reminder that a heart condition does not have to define what is possible.

Hospital

Our inpatient Cardiac Cafes provide a different, but equally important kind of support. Being in hospital can be overwhelming and families can spend long periods on the wards with little opportunity to step away from the intensity of their situation.

The two cafes in the hospital this month gave families a chance to leave the ward, take a breath and simply be themselves. Over a cup of tea, they can talk openly, share their experiences and reflect on their journey without judgement – surrounded by other families who understand because they are going through something similar.

These moments of connection can make a huge difference. Cardiac Cafés remind families that they are not alone. They create a community where experiences can be shared, friendships can begin and families can find reassurance from people who truly understand.

Sometimes, the value is in the simplest things – a cup of tea, a conversation and someone saying, ‘We hear you.’ CHSF Cardiac Cafes give families a safe space to feel understood and supported.

“Everything made an impact, i cant put my finger on one thing but all the support we received was amazing.” — heart mum

43 families supported in July

23 families received a tailored package of Family Support
20 families engaged with
10 travel grants given
39 supermarket vouchers given
116 visits to the ward
5 one to one Youth Work sessions
7 attended Cardiac Cafe

Support at every stage

Wellbeing boxes

When in hospital, no matter what age you are, we know sometimes all you want is a little treat. The team have been busy this month dropping off wellbeing boxes across the hospital, on the wards we support. The adult heart ward (L16), PICU (L47) and the neonatal ward (L43) received boxes filled with snacks and drinks, as well as a couple mindfulness activities.

Touching base

Always just a phone call away, this month we have had the opportunity to touch base with families who have been discharged. We are now dedicating time to following up with families when they are no longer on the ward, sign-posting them to local services and having conversations to see how families are once the ‘dust has settled’ after they get home

Inpatient Cardiac Cafe

This month the family support team hosted a Cardiac Café in the hospital for families. This was a time for parents and siblings to get away from the ward, have a little something to eat and drink and take some time for themselves.

The CHSF team provided colouring and mindful puzzle activities for parents.

A family who’s child was in surgery came along to take their mind off the day and have a space to simply sit quietly and not have to explain anything, with people who ‘just get it’.

Welcome to Holland

We currently have nine patients who are in hospital following a new diagnosis, and their families are now navigating a new world which can often feel lonely

Our support for new parents is so crucial – offering a listening ear, a friendly familiar face and a welcomed distraction, we can be there to make things a little less isolating

We often witness the grief parents may be experiencing when their child receives a CHD diagnosis. Whilst the love felt is more than a person can imagine, the loss of the life they imagined is still present.

From a mummy who is unable to breastfeed, to a daddy who fears holding their child because of their drains and wires – these are part of a journey they did not imagine they would ever be taking

This takes us to a great poem which was written to help people understand what it is like to raise a child with a disability:

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian, It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.

And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the lovely things… about Holland.

–Poem by Emily Perl Kingsley

Our extraordinary Orlah

This is the perfect time to introduce you to Orlah. Orlah was born with Down syndrome and congenital heart disease. Orlah had open heart surgery following her birth and is doing amazingly well. So amazing in fact that she is now inspiring others through her own social media platform! Give her a follow at Our Extraordinary Orlah | Facebook

I hope everyone has been enjoying summer and a break away from school and work. It’s been so hot though this year, and it’s not comfortable for everyone, so please take care.

We brought some lighter summer-vibes during Wimbledon by serving an Afternoon Tea on the ward for families and staff this month. We also had a great day out at CATCH city farm in Leeds this month for our summer Youth Event. Our young people met some friendly Alpacas with some familiar names… Chewy, Gizmo, Onion and Spider!

Thanks so much to Chris from Speak & Serve for delivering a story-telling workshop with the team this month. Our Family Support offer is growing all the time and families are so much at the heart of everything we do. Facts and figures will only ever show part of the picture so developing the skills to bring stories to life to demonstrate the real difference CHSF makes is so important for us. The team have homework to do now in developing our personal stories to share with each other at our next team meeting. Maybe we’ll even share some of these with you! Thanks also to our corporate partner Forvis Mazars Leeds for hosting in their calm and bright meeting space for this session – with fantastic views of the city!

Thanks as well to our long time supporter, Dave Rhino, for hosting another fantastic darts evening to raise money for CHSF. This is always lots of fun and the crowd really showed their support again this year – amazing! A special thanks to honorary team member, Jason (aka Keely’s husband!), for volunteering to sell raffle tickets on the night.

We’re very much looking forward to Superhero Walk in a few weeks, we’ll see many of you there. (Still time to sign up if you haven’t already). Our new Chair of Trustees, Colin Clewes, will be joining us this time. Colin has been a trustee for many years and the charity is very close to Colin’s heart. He will bring his passion and energy in supporting the team and championing families. We’re very much looking forward to working with him!

Ruth