21 February 2024

Heartfelt praise for charity cause championed by colleagues

“Our lives and the lives of #TeamRose have been endlessly enriched by her, and we’re braver, kinder, better people because of her.”

Colleagues whose lives have been touched by tragedy and trauma have been sharing their inspiring stories of the incredible support they’ve received from the outstanding organisation you’ve selected to be this year’s Staff Festival chosen charity.

Nearly 800 of you kindly took the time to vote for the 2024 beneficiary, with the joint nomination for the Children’s Heart Surgery Fund (CHSF) and associated Rose’s Library winning by some distance.

Based near the Leeds Congenital Heart Unit (LCHU), which is in Leeds General Infirmary (LGI), CHSF supports babies, children, teenagers and adults suffering from congenital heart disease. Its vision is to help hearts for life and its mission is to support the LCHU as a world-class centre of excellence – by providing the funding and resources needed to care for a patient’s heart, mind, family and future.

And it’s clear from your moving tributes that CHSF is held dear in the hearts of many colleagues across the University.

Pure sunshine

“Rose was pure sunshine. She was joy.” 

That’s how Sue and Katie O’Leary-Hall will always remember their beautiful four-year-old daughter. 

Rose was born with a terminal heart defect called Interrupted Aortic Arch – an ultra-rare condition that affects only one in 50,000 babies.

Rose had recently undergone a third surgical procedure to try to repair her heart, which her parents and the thousands of supporters who had willed the special little girl along on social media under the hashtag #TeamRose were hoping would change her life.

Although the procedure initially appeared successful, medics realised Rose’s heart had no electrical impulses and she had to be fitted with a pacemaker. Shortly afterwards, Rose contracted an infection and died.

Sue and Katie said their final goodbyes to Rose on September 4 last year – the day before she was due to start school.

Sue, who works for the Strategic Projects Team in the Faculty of Medicine and Health at Leeds, said: “She was noise and fun and mischief and cheekiness and the biggest huggles (Rose’s word!) imaginable. 

“Rose blazed into our world like a comet, making everything technicolour and leaving everyone who knew her delighted and exhausted in equal measure!” 

Fighting spirit

Rose was carried by Katie after they used their entire savings to fund a single round of IVF, which thankfully proved successful. They weren’t eligible for NHS treatment as they already had a child, Will, who was carried by Sue.

It was when Katie had her 20-week scan that doctors first raised the alarm. They were worried they couldn’t make out a portion of the baby’s heart.

Sue said: “We were told she had a very rare heart defect and were asked if we wanted to terminate. We asked what the options were, and they said an operation was possible when Rose was born. Without it, she would die within a few days.”

Rose needed a biventricular repair to fully tackle the damage to her heart caused by her condition, but as a newborn baby she was too small – and her heart too fragile – for such an invasive operation.

Instead, Rose underwent an alternative procedure just three days after she was born, followed by what Sue calls a “hellish few days” fighting for her life. But Rose’s indomitable spirit was evident even then, and she began to recover after 12 days having essentially been in a medically induced coma.

At 10 months old, Rose underwent another operation, though her heart still wasn’t strong enough for the much-needed biventricular procedure. She suffered a stroke 48 hours later that resulted in paralysis down her left side and seizures. But Rose’s bravery shone through again as Sue and Katie worked with her constantly during lockdown to help her regain a full range of movement.

Sue said: “She was just a powerhouse throughout everything that was thrown at her. She overcame incredible adversity ever since her very first surgery, coming back to fight harder every single time.”

Last August, Rose was finally deemed strong enough for the operation she needed. 

Sue added: “We felt like we’d won the golden lottery ticket. This was the operation that was going to allow her to lead a full and normal life.”

Although the 14-hour procedure was initially deemed a success, surgeons found Rose had no electrical impulses in her heart, so she underwent an operation to fit a pacemaker. But four days later, Rose’s heart began to bleed, and though surgeons fought valiantly to repair the damage, more holes kept opening up. Rose’s kidneys failed and she was put on dialysis and life support. Although she was briefly able to open her eyes and respond to voices, a later CT scan sadly showed Rose was effectively brain dead, with the painfully difficult decision made to switch off the machines.

Sue and Katie said: “We found out at the 20-week scan that Rose’s heart condition was terminal, but she was determined to come and be with us, and we were equally determined to be with her. Our lives and the lives of #TeamRose have been endlessly enriched by her, and we’re braver, kinder, better people because of her.”

Lasting legacy

Despite the grief they were experiencing, the couple decided they wanted to create a lasting legacy to their daughter, which is when they struck on the idea of Rose’s Library.

Sue explained: “When she was well, Rose loved stories and would often read to her ‘babies’. As a family, we would share stories together every night at bedtime, and we still do this with Rose’s big brother, Will, and hope that Rose is listening somewhere too.  

“Whilst we were on the Paediatric Intensive Care Unit (PICU) following Rose’s three open heart surgeries, we would read to her for hours, even when she was unconscious on life support so that she knew we were always there. The stories would transport us all to a happier place. 

“The day before Rose died, we invited friends who lived too far away to visit to record a favourite story on their phones and send these for us to play to Rose, so she could hear the voices of more people who loved her.

“As part of Rose’s legacy, we’ve created a physical library at what would have been her primary school, Pool-in-Wharfedale. Any book with a little red rose sticker inside the front cover is part of Rose’s Library.

“We also now plan to create an electronic library for the children in PICU at LGI, to enable them and their families to enjoy stories together at what is likely to be a frightening and stressful time. Stories are perhaps the ultimate means of escape into a different world of adventure, excitement and hope. 

“CHSF has very kindly agreed to help us by donating enough Kindles and tablets for each child who comes to PICU to have individual access to Rose’s Library during their time on the ward. We now need enough donations to help us purchase the electronic books for the children and their families to access. Our fundraising target is £5,000 and we’re so grateful to colleagues from the University for choosing Rose’s Library as a beneficiary of the 2024 Staff Festival – Rose would be delighted!”

Incredibly grateful

An average of one in 125 babies are born with heart disease, with about 400 children from Yorkshire, the Humber and North Lincolnshire requiring urgent open-heart surgery at the LCHU each year.

CHSF is there to support each and every congenital heart disease patient and family in our region, and is wholly funded by public donations.

It provides life-saving medical equipment for the LCHU, parent accommodation for families, essential ward resources and holistic family support. CHSF also funds staff training, scientific research and new clinical roles. Through the donations it receives, CHSF is able to help more than 17,000 babies, children and adults living with congenital heart disease each year.

Andy McNally, CHSF Head of Marketing, said: “We’re incredibly grateful to University of Leeds staff for voting to support both CHSF and Rose’s Library.

“Rose’s parents have devised such an amazing project in her memory – I’m sure the library will make a massive difference to families and patients in the months and years to come.

“And your donation to CHSF will help ensure patients and their families continue to get the best possible treatment at the Leeds Congenital Heart Unit and congenital cardiac clinics across the region. Thank you!”

Amazing support

Many other colleagues at Leeds have also received vital support from the fantastic CHSF team.

When doctors detected an issue with Anna and Rob Hunter’s unborn child, she was only given a 30% chance of surviving the pregnancy.

What should have been a routine 20-week scan revealed their tiny baby was suffering from hypoplastic right heart syndrome – a congenital defect where the heart doesn’t fully form on the right-hand side. 

Suddenly they were faced with an agonising decision.

Anna, who joined the University as an HR Officer last November, said: “It was an extremely worrying time for us. First pregnancies are for every parent, but we were facing a heart-breaking choice. 

“The fabulous nurses at LGI introduced us to CHSF, and we received amazing support from the very beginning. We were given several options, but in the end, we decided to see what Evelyn chose to do.”

Evelyn went on to defy all the odds, but while her prognosis improved slightly, she became seriously ill four weeks after her birth in April 2014. On the day the couple should have been celebrating their wedding anniversary, Evelyn underwent an emergency operation to fit a shunt in her heart. This was designed to provide extra blood flow to her lungs to boost her oxygen levels.

Anna explained: “The medical team had prepared us for surgery, but it was a very stressful time.”

Once again, CHSF stepped in to offer crucial support to the family. They were able to arrange accommodation for Anna and Rob on the Brotherton Wing at LGI, so they could take it in turns to be by Evelyn’s bedside throughout her prolonged hospital stay. They were even able to sleep next to their brave little girl when she first returned from the operating theatre. 

Anna added: “That gave us so much peace of mind – to be there when Evelyn needed us most. You can’t put a price on that.”

Thankfully, Evelyn stabilised and she was able to undergo further surgery just before Christmas that year, still only aged seven months. A final procedure followed in February 2020 – just a few weeks before the outbreak of COVID-19.

Anna said: “By this stage, Evelyn was five years old, and as brave as she was, she wasn’t coping well with all the medical procedures. She didn’t want to go into hospital because all she knew was it hurt.

“CHSF arranged for us to have the support of a child psychologist. But it was the little things that made all the difference as well. They provided Evelyn with toys, colouring books and sticker charts to keep her mind off the surgery. Evelyn was soon helping the nurses on their rounds… and covering the ward in glitter! This meant we could focus on what mattered most – taking care of our little girl.”

Now aged nine, Evelyn is well on the road to recovery. She’s due to have her five-year assessment in early 2025, and although she will remain on daily medication, it’s hoped she can now lead a full life. 

Anna said: “We always know in the back of our minds the surgery could fail, but we’re lucky Evelyn’s had a textbook response to her treatment so far. 

“She can get out of breath quite quickly while doing sport, and her face and hands can turn blue if she’s really cold, but there’s nothing holding her back now.”

The family, which includes seven-year-old sister Felicity, are keen to give something back to support others facing similar trauma in their lives.

Rob and his brother have completed the Hadrian’s Wall walk and cycled the full length of the Liverpool to Leeds Canal to help boost CHSF funds.

The family supports CHSF’s Wear Red Day every year, with Evelyn’s school linking it with Valentine’s Day activities to raise further awareness and money.

Anna said: “CHSF has been there with us all the way. They’re absolutely incredible and we can’t thank them enough.

“I’m delighted the charity will benefit from the Staff Festival funds. It’s vital they get the support they need, so we can’t thank the colleagues who voted for them enough.”

Incredible care

Stuart King, an Analytical Technician in the School of Civil Engineering at Leeds, also had a poignant reason for nominating CHSF.

His eldest son, Oliver, became seriously ill when he was aged eight. He was diagnosed with Wolff-Parkinson-White syndrome, which causes the heart to beat abnormally fast for periods of time due to an extra electrical connection in the heart.

It was several years before Oliver was old enough to undergo the six-hour operation required to repair his heart. Now aged 19 and studying Physics at the University of Liverpool, Stuart is proud to report Oliver is “thriving”.

He added: “Oliver’s diagnosis came out of the blue and was extremely worrying for us. It’s very stressful for any parent to be told their child has a heart condition.

“Everything about the care he received was incredible. The staff and surgeons were amazing – we received extremely good support throughout. 

“We all hear about the NHS struggling, but this experience really opened our eyes to the amazing work they do. We read about the fund while we were in hospital and I always said I would do something to support it if I could. I’ve already done some fundraising for CHSF in the past, and I’m delighted it has been chosen as this year’s Staff Festival charity. It’s a really worthy cause.”  

Packed programme

Staff Festival Project Manager, Jo Westerman, said: “Reading so many touching stories from colleagues, I can’t think of a more worthy recipient of this year’s Staff Festival proceeds.

“Rose’s story, in particular, is inspiring, so I’m delighted colleagues will get the chance to contribute towards a lasting legacy in her memory. It sounds like she was such a courageous little girl, and helping fund the library will be a fitting tribute to her amazing fighting spirit.”

Plans are already beginning to take shape for this summer’s exciting instalment of the hugely popular entertainment extravaganza, with a packed programme of events in the pipeline for the 2024 Staff Festival, including fundraising for our chosen charities.

All colleagues, family and friends are invited to join us on campus on 28 June for an enjoyable afternoon of activities, full details of which will be announced nearer the time. See the Staff Festival SharePoint site for regular updates and announcements about this year’s attractions, together with details of how you can take part.

If colleagues have been affected in any way by the content featured in this article and need support or just someone to talk to, they can access Staff Counselling and Psychological Support for help and advice.