Ward 51 Cardiac Speech and Language Therapist Jess Symonds was appointed last year, thanks to your donations.

Speech And Language Therapy (SALT) has the power to transform feeding, swallowing and communication outcomes and improve a child’s quality of life.

Jess sent us some anonymous feedback from families who have benefitted from her role, to show the effectiveness of this service:

“Considering my daughter’s heart condition, we were glad there is a team who are tasked in helping improve our daughter’s feeding. They gave us a specific plan around her condition and our daughter now drinks milk without any issues and eats solid food with such ease.

“Would like to thank Jessica Symonds who was so helpful and regularly attended to my daughter when in hospital. She and the team were patient and very meticulous in how they were to treat my daughter.

“We were incredibly worried in the beginning about our daughter’s health and growth, as she was on an NG tube due to a throat issue and feeding troubles. The SALT teams plan to get her off of the NG tube was gradual as her condition improved but it worked. Thank you.”

“The support specifically from this role is invaluable when your child is so poorly from birth and hasn’t established feeding yet or if your child is continually changing between different feeding methods.

“Jess was an unbelievable support in supporting my child’s safety to eat whilst also supporting me as a new mother navigate my feeding role. Working alongside Alix the Dietician you need both roles to succeed in the child feeding.”

“Very knowledgeable and excellent with all the help and information we continually receive whether it was on the ward, at home or coming to high risk clinic. Jess has really helped me with my child in terms of moving forward with weaning and drinking and he continues to progress and get better all the time.

“I wouldn’t have been able to do this without Jess’s knowledge and it’s helped me gain so much confidence with my child and with the condition he has.”

Jess’s role was only possible thanks to donors including Caddick Group and The Hospital Saturday Fund, and the amazing support of our fundraising community. Thank you!

We can only keep supporting life-changing projects like this one because of you

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CHSF appreciates that kind gestures – no matter how small – can make the biggest difference to our families.

In February 2025, our Family Support team continue to focus on the wellbeing of heart families thanks to your donations, alongside our financial and practical support. Here’s the full report…

Family support in numbers

31 families received tailored family support
(16 of those families were new families for February)
A further 36 families engaged with the Family Support team, including 10 youth!

A total of 69 families supported in February 2025

Financial Support In Numbers

12 families received travel grants
5 external financial grants completed
26 Tesco vouchers given
12 meal vouchers for the hospital canteen

Photo: Family Support team, Sarah and Lu, visiting the wards with our wellbeing trolley

7 ‘Sibling Certificates’ given

Such a small gesture can create a huge impact. Our Sibling Certificates validate siblings of our heart patients and let them know how just amazing they are.

Photo: Family Support/Youth Worker Lu with super sibling Perri on the ward last year

Comfort and care package

21 people have accessed our ‘Comfort and Care package‘ including 13 from Adults and Neonatal. This package includes toiletries and essential items.

10 Parent-To-Be packs given to Fetal Clinic

Cardiac Cafe York

Our support extends beyond the hospital walls, with families coming together across the region at our Cardiac Café events.

“Amazing cafe today guys, really enjoyed seeing you all. Plenty to eat and drink. Fun activities for the kids to keep them entertained. Thank you so much for everything you all do.”

“Good location for us. The boys really enjoyed the activities, especially the plastercine. Everyone is so friendly and it was nice to meet more members of the team and catch up.”

Taking some time out

3 families benefited from a time out from the ward this month.

Our time is the most valuable gift we can give, offering a listening ear can support parents to escape their mind and surroundings, and encourage them to take some much needed time for themselves.

“You don’t know how happy I felt after our coffee, it helped to get away and talk”

“I had a big rant and a cry and I feel much better now I have got it all out of my system”

Cross-working and signposting

6 new external services and charities engaged with

February 2025’s impact shows that all aspects of our Family Support service are equally as valuable – no matter how big or small the gesture. CHSF ensure heart families in our region have both practical and wellbeing support throughout their journey with congenital heart disease.

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.

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Thanks to your “fin”-tastic fundraising, CHSF has been able to fund Ward 51’s famous fishtank for many years. Children use the tank as a goal to walk towards while recovering from surgery, while others simply love communing with the watery residents.

The fish have long been a mainstay on the children’s cardiac ward for a very good reason – they genuinely help with the wellbeing of our patients and families.

In October, the family of heart hero Ted told us:

“My son had his heart surgery on Wednesday and we are currently in recovery.

“He has been reluctant to walk but this morning, with a bit of help from his friends and the nurses he managed a walk to the fish tank and got to feed them.”

Other feedback this year has included:

“We spent many hours sat by the fish tank (on Ward L51).”

“The fish tank is always a part of my sons journey too. He’s 15 now and he still goes to see them.”

“Our son Hugo loved seeing the fish when he was on the ward in Dec 2023 at only 20 months old.”

“Oh we’ve spent quite a bit of time by the fishes. Named every one!”

In fact there has been a fishtank on the children’s cardiac ward in Leeds for decades, as this amazing comment describes:

“There was a similar fish tank at Killingbeck when our daughter was there 37 years ago. She did a fun run with her friend when she was older and we bought a diver and a treasure chest for the tank with the proceeds!”

Our fabulous Play Specialist Team witness how important the fishtank is to recovery on a daily basis. Senior Healthcare Play Specialist Emma Marshall said:

“The fish tank is an integral part of the ward. It is enjoyed by everyone – patients, families and staff alike. It is used as an incentive for patients post-surgery to mobilise to and then feed the fish whilst resting and watching them eat. Patients enjoy getting this job to do and mobilising is a vital step in their recovery journey.

“We will often see parents with young babies and toddlers taking walks from their rooms and bedspaces to visit the fish. It is a well-known fact that watching fish is a good mindful activity and helps calm a busy mind.

“We are so grateful to CHSF and all their supporters in helping to fund the fish tank for us all to enjoy.”

Thanks to your amazing fundraising, CHSF has been able to fund life-changing care across our region in the form of local Children’s Cardiac Nurse Specialists (CCNS). They have become an extension of the Leeds team and their hard work is valued greatly.

By theses nurses being based closer to the patients’ homes they provide seamless care between services and locations, improving the experience for patients and their families.

In some cases these regional roles have been initially funded by CHSF, and then picked up by the particular Trust. There are currently regional CCNS’s in post at hospitals in Sheffield, Grimsby, Scunthorpe, Rotherham, Bradford and Halifax – and they are all doing a fantastic and life-changing job.

Our blog about KardiaMobiles gives one example of how support from CCNS Paula Cowgill at Calderdale Royal Hospital helped a worried family get a much-needed diagnosis.

Paula’s work in her regional clinic this year has also included:

69 ECGs (electrocardiograms) given to check a patient’s heart activity
10 patients received Kardia devices to check their heart rhythms at home
92 parents were directed to further support within the hospital and externally
151 patients got verbal and written information to help manage their condition (for instance regarding infective endocarditis, dental hygiene, diet and in one case, the basics of CPR on request from a patient’s mum)
7 home visits to give continuity from clinic

“Families tell me they love having a person within the hospital who can support them outside of their clinic appointments.”

Lucy is the local nurse specialist at Rotherham Hospital

Lucy Smith’s role in Rotherham is still being directly funded by CHSF thanks to your donations, and she gave us some feedback on why it proves so important. Lucy said:

“Prior to my role, patients had minimal local cardiology support outside of their PEC’s (Paediatrician with Expertise in Cardiology) normal part-time working hours. This meant they often presented to A&E, or our local Children’s Ward for advice.

“Now they have a contact within the hospital, patients tell me they feel more at ease if they have concerns. Questions they ask me can be related to a specific condition, or simply chasing a lost appointment in the outpatient clinic – but families tell me they love having a person within the hospital who can support them outside of their clinic appointments.

“I have frequent contact with numerous members of one family. I get the impression they love seeing myself and the PEC in clinic as they feel they receive individualised care tailored to their situation.”

Cat Brown, the Lead Nurse at the Yorkshire and Humber Congenital Heart Disease Network, manages these roles and explained how your donations pay for much more than just their salaries:

“As a network we aim to support equity and high-quality care irrespective of where patients live. The local nurse roles are pivotal to this, enabling seamless care, closer to home. I have seen first hand how these roles improve the service experience our patients and families receive.

“Your donations have also ensured the regional nurses have received extra specialist training where required and medical equipment for their patients to help them monitor and diagnose their conditions. Thank you!”

Since our charity was founded in 1988, thousands of families have stayed in CHSF-funded accommodation.

That includes both our own accommodation in Brotherton Wing, and home-from-home Eckersley House – which, thanks to your donations, has received well over £500,000 from CHSF since 2010.

One family who have used both of our accommodation services are the Bunce family from Bolsover near Chesterfield.

Heart mum Sofie told us all about tiny heart hero Jude, who is currently in the children’s cardiac ward following multiple procedures. Sofie told us why the parent accommodation has been so crucial:

“Jude was diagnosed with a large Ventricular Septal Defect (VSD) during my pregnancy and this was confirmed at birth. The surgery had to happen within the first 3-4 months of his life due to how large the VSD was.

“He was unwell for his first scheduled surgery and admitted to Chesterfield Hospital, he was then transferred nearly 4 weeks later to Leeds General to await surgery. We have now been here at LGI for 5 weeks.

Jude is currently being treated on Ward L51 and mum Sofie from Bolsover is staying in CHSF-funded accommodation nearby.

“Jude had his VSD repair but remained in the Paediatric Intensive Care Unit and High Dependency due to being in complete heart block.

“Sadly this resulted in a further surgery to fit a permanent pacemaker and this whole time we were unable to stay with him overnight. Our stay is still ongoing with Jude potentially requiring further interventions.

“The parent accommodation has been our lifeline – it means we are a 5-minute walk to our baby at any time and we can get the rest we need to care and be there for him during the day.

“It means we didn’t have to fork out hundreds (if not thousands) of pounds on accommodation so that we can be with our baby as much as possible and even make sure we have clean clothes AND cooking facilities, along with the support network of other families also staying. In our case, it also means our eldest child can come and stay with us which means the absolute world.

“Jude’s dad and I will be personally raising funds for the charity that have made the hardest time of our lives that more bearable, but I’d love to see people donating as much or as little as they can.

“The charity providing a ‘home’ for us parents at such a worrying time means the world and there aren’t the words to thank CHSF enough for all they do.”

This year, CHSF gifted £15,000 to The Sick Children’s Trust (SCT) who run and manage Eckersley House, taking our overall contribution over the years to well over £500,000 – thanks to your donations.

We received this wonderful note from Catherine Garratt at the Sick Children’s Trust.

“I just wanted to get in touch to confirm receipt and say a huge thank you for your incredible donation of £15,000 towards our Eckersley House for cardiac families. Your funding truly makes a difference to the families whom we support and we are very grateful.”

The house relies entirely on voluntary donations to continue operating and pay running costs.

Eckersley House will have accommodated hundreds of our parents by the end of 2024, just in this year alone, and your help is urgently needed so this service can continue.

If you are able please consider making a donation to Children’s Heart Surgery Fund. It will make such a difference to so many. Donate at chsf.org.uk/donate

Thanks to your amazing fundraising, Children’s Heart Surgery Fund (CHSF) are able to purchase INR home testing kits for heart patients of all ages.

The Leeds Warfarin Clinic ran an anonymous survey earlier this year to get feedback on INR machines amongst young patients and their families.

Here’s 5 good reasons why our patients really need INR machines…

REASSURANCE

“If I’m at all concerned about my child’s health, I can quickly do a test at home and then notify the clinic or hospital immediately if the INR result is abnormal – which is hugely reassuring.

“Plus, this must be a great benefit to valuable surgery/hospital time too, if able to do this at home?”

NO MORE MISSED SCHOOL

“We are reliant on public transport as neither my husband or I drive.

“If we did not have a home testing kit our daughter would miss out on a lot of school as it take quite a long time to travel to and from our local hospital within their warfarin clinic times.”

HELPS NORMALISE BLOOD TESTS

“We’ve had a home testing kit for something like 7 years. It allows us to test in a friendly environment with no pressures where any fears can be dispelled.

“It is not at all stressful and my child now accepts it as readily as having their nails cut.”

SIMPLIFICATION

“It just makes everything easier if you can test at home. Knowing you can get an INR that’s up to date makes managing the dosage a lot easier.”

SAVES TRAVEL TIME

“Saves travelling to a hospital 35 miles away for bloods.”

Thanks to your donations Children’s Heart Surgery Fund have provided hundreds of INR machines to patients with congenital heart disease, and their families. But, what are INR kits, and why are they necessary?

Find out more about INR kits and the difference they make on our blog here.

Thanks to your amazing fundraising, Children’s Heart Surgery Fund (CHSF) are able to give Katie Bears, medals and certificates to every baby and child who has open heart surgery at Leeds

As the following blog shows, this precious gift is truly something to ‘treasure forever’ as a symbol of resilience, and is always on hand to give ‘cuddly comforts’…

Grace Lawson is 13 years old and from Morley in Leeds. She has had numerous surgeries to repair her heart after she was diagnosed with Tetralogy of Fallot at birth (followed by cerebral palsy and global development delay at 3 years old.)

Her first open heart surgery occurred when she was just 3 months old, where she had a BT shunt fitted. At 18 months she had her major heart repair, and has just had a pulmonary valve replacement this year.

In between these, Grace has had numerous stents, angioplasties and catheterisations.

Grace suffered a stroke during one of her earlier operations which left her with some difficulties in terms of her walking, fine motor skills and her processing of information.

Grace’s mum, Amy, says Katie Bear has been a comfort and support all through the journey:

“Grace loves Katie Bear! We had an earlier one given to us which is showing it’s age now! (We were featured in BraveHearts magazine with Grace holding the bear and certificate.

“When the Heart Unit faced closure we attended the protests as it means so much to us and shortly after I did a Firewalk for the charity 9which was also featured in the Yorkshire Evening Post).

“Katie Bear is a lovely gift to the children it brings a great smile and some cuddly comforts when times are difficult in hospital.

“I also believe that it congratulates a great big achievement for the children and is something to hold onto and treasure forever.

“I must admit I do love Katie Bear myself actually, I see Grace’s most recent bear sat proudly on display and I think ‘We did it!’ It’s a great comfort.

“We would do all we can to support this amazing charity – it really does change people’s lives for the better, so thank you!

Thanks to your incredible support, CHSF have been able to help empower Grace and her family in other ways. Amy added:

“I am forever grateful to the charity for providing us with so much support over the 13 years Grace has been receiving treatment.

“CHSF have enabled us to be at her side with the parent accommodation when she was in Paediatric Intensive Care. It has brought her great comfort with the use of the toys, electronics and cuddly bears.

“Also the charity has funded life-saving equipment and support staff which have been invaluable to our family during Grace’s journey.

“The charity has always gone above and beyond to make the children more comfortable looked after, entertained, valued and most importantly has given them a lifeline. Thanks to all the support that CHSF provide we are able to look forward to a positive and healthier future for Grace.

Amy says Grace is currently still at home recovering after her most recent surgery for the valve transplant in November:

“To say we are proud of Grace is an understatement. She’s absolutely determined, and her strength is admirable she really lives up to her name our ‘Amazing Grace’. Throughout it all she has never failed to put a smile on other people’s faces with her cracking sense of humour.”

We can only do what we do, because of you. Thank you.

You can read more about the difference you make in our 2024 impact report.

That’s why our Family Support team is there to provide practical assistance, wellbeing support and moments of respite to families facing the challenges of a CHD diagnosis.