Danny Hirst, 20, was born with a hole in his heart and had it repaired by open heart surgery in Leeds when he was 11.
A year later, he had further open heart surgery to replace his aortic heart valve.
Danny told us how he feels about his scar, and how life is treating him as an older congenital heart patient.
“I never disliked my scar whilst growing up, but I was still afraid for it to be on show sometimes as I worried what people would think.
“However, as I have got older, I have realised what a great thing it is to have, I’ve learned to really appreciate it and to be proud of my scar as it is a great reminder of everything that I have been through to get to where I am today.
“After time has passed since my operation, I barely think about living with CHD as thanks to everything CHSF and the LGI have done I can live a completely normal life without the need to constantly worry.
“I am currently having check-ups at the LGI every 12-18 months with a doctor. I am currently taking warfarin and test my blood every 3-5 weeks.
“Scar Selfie day is important. It helps to show young people that there are people just like them.”
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1. Danny rocking his scar at the gym. 2. Danny works at The Dubliner pub in Newcastle. He is running the Great North Run for CHSF this year and is donating all his tips every month to his fundraising page.
“I haven’t let having CHD stop me from doing anything in life. One of the biggest helps provided by CHSF is my INR home-testing kit. This kit allows me to test my bloods regularly at home, instead of having to go into hospital to have them checked, which obviously is a huge convenience and lets me continue to live my life as normal.
“I think this Scar Selfie awareness day is important and hugely helpful to anyone living with CHD or a scar.
“It helps show especially young people that there are people just like them and that their scar is nothing to be ashamed of but celebrated.”
Danny has been an amazing advocate of CHSF ever since his first operation.
He appeared in a CHSF video as a teenager, abseiled down Wakefield Cathedral for CHSF last year and is now running the Great North Run for our charity in September.
We’re so grateful to young people like Danny who choose to share their story to inspired other young people living with CHD. Thank you.
We’re all behind you Danny!
Thank you and all the best for the Great North Run in September!
MORE REAL STORIES
A cycling team of Dairygold colleagues are taking on the length of the Leeds Liverpool Canal this weekend to raise funds for CHSF. Their inspiration? Heart warrior, Francis!
Named the “Tour De Francis” Dairygold Cycle Ride 2024, the team will cycle the 127 miles from Liverpool to Leeds on 17-19 May.
The group is made up of Stuart Moore and his son Danny, Matt Lawton, Phil Halliwell, Sean Cotter, Jim Grieve and Nathan Bradshaw.
Francis’ mum and dad, Abbie and Ash, tell us a bit more about their son’s journey so far…
“Francis was born in 2015 with a condition called Heterotaxy. This affects many of his internal organs including his stomach, kidneys, liver and spleen but mainly his heart.
“It was noticed on our 20-week scan that Francis’ stomach was not where it should have been and was poking through a hole in his diaphragm. They also noticed several problems with his heart, meaning he had a single-ventricle heart.
“This was heart-breaking news. Being first time parents, we were thrown into the world of caring for a medically complex child who we were told may not survive.
“As the weeks passed and we attended more scans his chances of survival looked more promising, and plans were made for his arrival by the medical teams.
Heterotaxy syndrome is a rare condition where many organs in the chest and abdomen are formed abnormally, in the wrong position, or are even missing. (The beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.)
Many children with Heterotaxy syndrome have complex congenital heart defects (CHD), which often make the condition challenging to treat.
“On the 3rd March 2015 we finally got to meet our gorgeous boy and at 3 days old he had his first of many surgeries, this one to repair his diaphragm and stomach. We were relieved to find out his heart was stable enough for him not to need surgery straight away.
“After 8 weeks on the neonatal ward, we got to take Francis home! He was tube fed through a gastrostomy feeding tube and on many medications.
“When Francis was 5 months old, he was admitted to the LGI for his first open heart surgery. After 6 weeks in hospital Francis was allowed home again.
After his first open heart surgery, Francis had six-monthly echocardiograms (echo’s) and other tests and treatments to keep a close eye on his heart function.
“But his heart was not fixed, and never will be. It is impossible to create a normally functioning heart without a full transplant for children with Francis’ condition.
“Over the next few years Francis underwent kidney and eye surgery, six-monthly cardiac echo’s and other tests and treatments to keep a close eye on his heart and kidney function.
“Francis’ main struggle has been his low oxygen levels due to his blood mixing in his heart. With oxygen levels of around 75%, Francis found most day-to-day tasks difficult, even climbing the stairs was a real challenge.
“When our closest friend asked if he could choose a charity close to us to raise money for, there were no question that Children’s Heart Surgery Fund deserved every penny.”
“But most heartbreakingly for us, was watching him unable to keep up with friends.
“He can’t play outside at school during the colder months and when he can he often finds himself alone as can’t keep up with the others.
“In February 2024, Francis was admitted to Leeds Children’s Hospital once more for his next open heart surgery, the Fontan.
“Throughout our stay on the cardiac ward the whole team were unbelievable in caring for Francis, and us. They supported, cared for and encouraged him every step of his recovery.
“After a long three weeks fighting to have his chest drains removed, he was discharged one day before his 9th birthday!
“Francis now has oxygen levels in the high 80s to low 90s, meaning his quality of life will be improved immeasurably.
“When our closest friend, and Francis’ favourite person, asked if he could choose a charity close to us to raise money for, there were no question that Children’s Heart Surgery Fund deserved every penny.
The Fontan procedure is open heart surgery. Often, it’s done as the third of three surgeries to treat certain congenital heart conditions. Francis had his Fontan surgery in February this year.
“They fund not only life-saving medical equipment but toys, books, games consoles and much more for the children’s cardiac ward. They also support the families of cardiac patients, not only emotionally but also financially during hospital stays.
“Their contributions and care were stand-out throughout our stay.
“We would be so grateful for any contribution to show our thanks and support to this amazing charity that has, and continues to bring hope, love and care to families like ours.”
We’re so grateful to this terrific team for choosing to fundraise for CHSF in this way. What an inspiration you all are!
To get behind the ‘Tour De Francis’ riders, visit their JustGiving page at: www.justgiving.com/page/stuart-moore-1711396942465
Meet Oliver from Hull who was born with a heart condition called Tetralogy of fallot.
Thanks to the life-saving work of the Leeds Congenital Heart Unit, Oliver is thriving and has been able to pursue art as a hobby and, more recently, a career in finance!
Now 22, Oliver shares his journey with CHD so far and how he has supported CHSF with his family to say ‘thank you’ for the care he received in Leeds…
“I was born with Tetralogy of fallot and had open heart surgery when I was a year old.
“When I was sixteen, I had my second open heart surgery to replace one of my valves and I now have an annual heart scan to check how my heart is doing.
“Throughout my life, my family have done many casino nights and coffee mornings to raise money for Children’s Heart Surgery Fund.
Oliver had his first open heart surgery at Leeds wheen he was just a year old.
Oliver and his brother share a passion for art so arranged a fundraiser for CHSF where they raffled off a drawing commision as part of a Coffee Morning,
“In 2022, I worked with my brother to arrange our own fundraising coffee morning, which was a great success. As part of our coffee morning, we held a raffle for a drawing commission done by me and my brother, since we are both passionate about art.
“I started at Arco in 2021 as a finance apprentice, and I passed my level 2 AAT Foundation certificate in accounting apprenticeship at the start of 2023. Most recently, I started the level 3 qualification of AAT in September of 2023.
“My apprenticeship and job have greatly helped develop my confidence and I enjoy the range of tasks that I do within the Transaction Team of Arco’s Finance department.”
We’re really grateful to Oliver for sharing his story with us. It is so inspiring for young heart patients and families to see a young adult doing so well.
We are of course also so thankful to Oliver and his family for their continued support of CHSF!
“We owe everything to the incredible team at CHSF.”
The Yorkshire Theatre ballet stage is set for brave young dancing star Ava
An 11-year-old girl from Liversedge in West Yorkshire who was born with two holes in her heart and required open heart surgery aged just 10 weeks old will take to the stage next month as part of Yorkshire Theatre Ballet.
Yorkshire Post, 30 April 2024
Richard Fidler, Features Writer
Ava Brearley started to dance aged two at Elaine Howarth’s Centre Stage in Cleckheaton and has regularly competed in dance festivals, competitions and championships winning a variety of medals and trophies along the way before landing a part in a ballet production of Snow White.
But her journey from operating theatre to the stage at Leeds Carriageworks Theatre on May 24-25 has been far from easy after scans during pregnancy discovered that she was suffering from a Atrioventricular septal defect, a congenital heart disease.
Mum Rebecca Brearley said:
“Ava was diagnosed at our 20-week scan, we remember the day like it was yesterday. The excitement of seeing her and hearing her heart beat again, the only decision thinking we had to make would be, do we find out the gender?
“During the scan we had no nerves, but they asked us to go for a little walk to see if she would move as they wanted her to be in a different position. We still never thought anything was wrong and when we returned after the walk there were two sonographers in the room and they said ‘your baby has a problem with its heart, it as not formed as we would have hoped and we will refer you to Leeds for further tests’.”
With a bank holiday delaying the initial appointment, Rebecca and dad Danny were understandably worried. But now under the care of Leeds Congenital Heart Unit things began to move much quicker.
Ava had life-saving open heart surgery at 10 weeks old at the Leeds Congenital Heart Unit
“Ava’s journey at Leeds started earlier than expected,” said Rebecca. “She was due to have the surgery at six months, but started showing signs of struggling within her first few weeks. Unbeknownst to us, Leeds Children’s Hospital was at this point going to be our home for the next two to three months.
“The surgery was delayed twice due to other complications and she was admitted into intensive care twice before she finally had her surgery at 10 weeks old. The surgery day was very bittersweet. The day we had longed for had finally arrived and she was finally well enough to go ahead with the operation – the start of getting her better and the chance of a full, happy life.
“However, handing over your baby girl to have open heart surgery was so emotionally difficult. The team were incredible, knew exactly how to support us and what we needed to hear at that very time. The day felt to be neverending. After 12 hours we finally got the call she was out of surgery and back in intensive care.”
There is a possibility that Ava may need more surgery in the future.
Rebecca continued:
“We were escorted into a side room to discuss how the surgery went. I actually don’t recall too much from this meeting but my brain picked out ‘we have repaired the holes and her valve and we are happy with how the surgery went’. That was all I needed to hear right then – now let’s go and see our brave little heart warrior.
“Seeing her all wired up, swollen and with her scar for the first time, I remember feeling so incredibly happy and proud.” And 10 years post-surgery Ava continues to thrive. There is the possibility she could require further surgery in the future on her valves as they have always leaked slightly and Ava attends annual check-ups with Dr Barwick who is pleased with her progress.
Rebecca said:
“The support from CHSF was incredible, without them our journey would have been so much harder. We had been given a family room to stay in when Ava was very poorly, allowing us to stay close at all times whilst also giving us time to spend together with our other children – Ella, 13, and Sam, 4.”
As soon as she was able, dancing became a huge part of Ava’s life. She has successfully auditioned to be a Northern Ballet junior associate for the past two years along with being offered a place on their Centre of Advanced Training programme from September.
“To see her in her first production is so special,” said Rebecca. “We never thought this would have been possible from what Ava went through as a baby. We are so incredibly proud of Ava and her dedication, passion and love for ballet. We owe everything to the incredible team at CHSF.”
Tickets for Snow White are available at www.carriageworkstheatre.co.uk.
To make a donation to CHSF, visit chsf.org.uk/donate
Heart warrior Isabel is 10 and lives in Creswell. She had open heart surgery at Leeds when she was 3 months old.
Isabel featured on our blog for ‘Warrior Wednesday’ back in 2021 and the piece details more of Isabel’s early years and medical treatment. Read it here.
For World Autism Day Isabel’s mum, Natalie, tells us more about her daughter’s diagnosis of Autism and Sensory Processing Disorder and brings us up to date below…
Natalie told us:
“Isabel’s diagnosis was Tetralogy of fallot, Double outlet right ventricle (DORV) and Ventricular septal defect (VSD) and underwent life-saving open heart surgery on 18th March 2014. She recovered well and was able to go home six days later.
“Isabel is now 10 years old and she has had two further visits to Leeds. First in May 2018 for a sedated echo and in December 2021 for an MRI.
“Looking at Isabel it’s hard to tell she has a very complex heart condition/heart defects. Her heart is now over enlarged on the right-hand side and didn’t reduce in size after surgery.
“She also has two very leaky heart valves that are closely monitored every six months.
“When Isabel was in for her MRI in December 2021 the play specialists went above and beyond in making sure Isabel was comfortable and settled on the ward. They had previously met Isabel for her sedated echo three years earlier. They made Isabel’s bed all sensory for her.
“This included lights that could be changed and sensory toys that helped relax Isabel for her time in hospital. We often distract Isabel with our iPhones or bubbles or strawberries. When she is having a scan, she’s ok until she feels the jelly and then it is a struggle to get Isabel to lay still and cooperate.
“Isabel was diagnosed with Autism and Sensory Processing Disorder just after her 4th birthday. She is also non-verbal with lots of sensory needs.
“Isabel is a very active little girl who loves nothing more than to be constantly on the go so for that reason she finds hospital appointments to be quite stressful.
“She loves to be moving about whether that be climbing, jumping, running etc.
“We were told a few years back if she wasn’t as active as she was then she would have needed her next operation by now.
“We attend an Autism friendly gymnastics session on Sundays. This has helped Isabel so much with her sensory needs, and being around other children is great although she’s known as the little daredevil by the other parents!
“We would like to thank Children’s Heart Surgery Fund for everything they do in supporting the Leeds Congenital Heart Unit.
“Your support has been amazing over the last 10 years. Especially for providing us with accommodation. We live 50 miles from Leeds, so this was one thing we didn’t have to worry about!”
Research shows that children with congenital heart disease (CHD) are around 33% more likely to receive a diagnosis of autistic spectrum disorder (ASD).
At Children’s Heart Surgery Fund we constantly looking at ways we can better support heart families in our region with an additional diagnosis of autism.
We are committed to capturing the voices of these children, young people and their parents, to fully understand and build the support they need from CHSF and the NHS staff teams at all stages in their health journey.
It’s only with your support that we can keep being their for the thousands of babies, children and adults like Isabel living with a heart defect in our region. We’re there for their families too!
Could you make a donation towards our life-saving work?
MORE REAL STORIES…
Did you know that 50% of babies born with Down Syndrome are also born with a congenital heart defect?
Olivia-Grace had her first open heart surgery in 2021 aged six months old. Her mum Sharon told us all about the medical journey of heart hero daughter in this special blog for World Down Syndrome Day.
Read on to find out how you helped make her “the happy 2-and-half year old she is today” through your donations…
Mum, Sharon, told us:
“We found out that Olivia-Grace had a Complete Atrioventricular Septal Defect (AVSD) when she was two weeks old. She was started on diuretic medicine and high calorie milk to help her gain weight for her open heart surgery.
“Olivia-Grace was due to have her surgery in October 2021, at 4 months old, but when we arrived at Leeds, Olivia-Grace’s lung had collapsed in the car park. She had two viruses and she ended up on vapotherm oxygen and antibiotics on the High Dependency Unit (HDU).
“It took her until early December to recover from the viruses and she had her surgery on the 29th December 2021.
“After 8 and a half hours in surgery we went to see her in PICU where her surgeon explained all had gone well but she’d suffered a complete heart block during surgery. This meant she would need a pacemaker fitting.
“Unfortunately, Olivia-Grace became very poorly as both her lungs had collapsed. She had a lot of fluid in them and had come down with two more viruses.
“After three weeks in PICU and another surgery to fit her pacemaker, Olivia-Grace moved to HDU and then onto the heart ward.
“Due to her infections, Olivia-Grace was needing oxygen, so we spent the rest of our stay in hospital on the respiratory ward.
“After five months, Olivia-Grace was discharged from hospital on oxygen. She’s now a happy 2-and-half-year old!
“During our journey, CHSF helped us massively by giving us accommodation so we could be with our little girl throughout her stay.
“Sarah in the Family Support team came around to see us on the ward, chatted to us and gave us a voucher towards our food in the local Tesco.
“She also sorted some money towards train expenses so that our other children and my husband could come and visit more.
“This was all was a massive support and help during our journey.”
The Creed of Babies with Down Syndrome
My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I am no different
His love knows no bounds
It’s those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I’ve chosen
Will help me get started
For I’m one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It comes from the heart
We all have the same purpose
Though not from the start
The Lord gave me life
To live and embrace
And I’ll do it as you do
But at my own pace
– Author Unknown
It’s only with your support that we can keep being their for the thousands of babies, children and adults like Olivia-Grace living with a heart defect in our region. We’re there for their families too!
Could you make a donation towards our life-saving work?
MORE REAL STORIES…
Before he was born, Arthur from Rotherham was diagnosed with Hypoplastic right heart syndrome and RV coronary dependant circulation.
As told by mum, Jessica, read about Arthur’s journey so far and how his family have been supported by CHSF since day one…
Mum, Jessica, told us:
“Arthur was born in Leeds General Infirmary on 22nd May 2021 and cared for outstandingly from the offset. He was born with hypoplastic right heart syndrome and RV coronary dependant circulation which was diagnosed prenatally.
“He had his ductal stent at two days old by Dr Jamie Bentham and after almost a month was allowed home – NG fed with an oxygen saturations monitor, to keep an eye on his SATs.
“High risk reviews were fortnightly until Arthur had his Glenn circulation by Dr Jaber at 6 months old, and then he was under Dr Deri at a satellite clinic in Rotherham.
“CHSF have been on hand since before Arthur was born.”
“Dr Deri gave us the confidence to take Arthur to Disneyland Paris. We carefully planned this as Arthur is unable to fly, but it allowed us as a family to make amazing memories that will last forever.
“Arthur recently went in for a procedure and investigations and is awaiting further open heart surgery for a valve repair. Hopefully within the next year he’ll have his Fontan.
“Children’s Heart Surgery Fund have been on hand since before Arthur was born.
“Finding out your child is going to be born with a very complex heart and that they will have to undergo so many procedures was hard to understand. We had pointers to informative sites explaining Arthur’s condition, and places where we could see other children just like Arthur, and how other families have adjusted to having a heart warrior baby.
“When I gave birth and Arthur was out of PICU and HDU he went to the ward and I was given a pack of essentials as well as a place to stay, all funded by CHSF, whilst my baby recovered and was strong enough to go home.
“Without an oxygen saturations monitor, Arthur couldn’t leave to come home. However, CHSF funded a SATs monitor so I could keep an eye on his oxygen levels daily and know if anything was wrong or he wasn’t hitting his target (Arthur’s saturations are only 70% where as a ‘normal’ circulation sits at 100%).
“CHSF also provided us with training in CPR so we were educated on everything we needed to help Arthur should we be in such a situation, at any time.
“We use [Katie Bear] to talk to Arthur about his special heart.”
“When Arthur had his Glenn procedure, he received a Katie Bear, certificate and medal which we cherish dearly. Katie even came to Disneyland with us!
“This is such a comforting gift at such a stressful and emotional time, and we use her to talk to Arthur about his special heart. This has helped him gain understanding even at such a young age.
“Again, during this stay we had home-from-home accommodation funded by CHSF and we will eternally be grateful.
“Our aim is to continue raising awareness for CHD and raise as much as possible for CHSF!”
It’s only with your support that we can keep being their for the thousands of babies, children and adults like Arthur living with a heart defect in our region. We’re there for their families too!
Could you make a donation towards our life-saving work?
MORE REAL STORIES…
“HAPPY HEART MONTH HEART WARRIORS!
“This month we stand united with our heart community. We share our stories in hope that someone going through the same gets some kind of reassurance they’re not alone.
“This month we remember the highs and lows of being a heart parent.
“This month we remember those precious heart warriors that never made it home.
“This month we thank our doctors, nurses, and surgeons who have made our warrior’s lives possible.
“Elijah is my heart warrior – how far he’s come from being born to now!”
— heart mum, Emma
“At 20 weeks, you’re told your unborn baby has an abnormal heart and only one lung.
“Two days later you’re given a diagnosis of pulmonary atresia with a ventricular septal defect (VSD), right aortic arch and Major aortopulmonary collateral arteries (MAPCAs). Also then finding out another two days later, your baby has a chromosome disorder, 22q11 deletion.
“Your whole world turning upside down in the space of a week!
“Meeting new doctors, surgeons, specialist nurses, support workers and most importantly a new family…
“Elijah’s first intervention was a cath lab in April 2022, by the amazing Dr Bentham. This is where we were told that without heart surgery, Elijah would only make it to age 13.
“Fast forward to June 2022 where Elijah becomes part of the ‘zipper club’. He goes in for his first 6-hour heart operation to help grow his pulmonary arteries, by the amazing surgeon Dr Osama Jaber. This operation was successful in Elijah’s case (it sometimes isn’t) and he was allowed to come home and grow.
“Finally, after a year, Elijah was a candidate for his repair. So, in July 2023, he first went to cath lab for his MAPCAs occluding.
“A day later he underwent a 10 and a half hour operation to repair his heart by the amazing Ms Carin van Doorn. This would hopefully prolong his life to adulthood!
“Although we had four plans, most things went to plan – with a few hiccups along the way. Now we wait for another cath lab to see how Elijah’s heart is handling completely new blood flow, the pressures inside the heart and how his left lung is doing.
“The wait is agonising, as so many other things are going on, but here Elijah is, even with a half-repaired heart – he’s fighting strong!
“Celebrate every tiny milestone with us… The bloods that didn’t clot. The X-rays that came back good. The ECG that’s normal for our warriors. Getting to 92% oxygen on their own! Having open heart surgery, then getting up and walking a few days later!…”
“Today I sit in complete awe of him. What he’s overcome. How on earth he’s managed to keep fighting through everything that’s been thrown at him and he’s only two years old!
“I have so much admiration for all our heart warriors and the parents who have to keep that smile going, even in the hardest times. We love you all so much for your support, strength and help you’ve given us these past two years!
“Our heart warriors are relentless, resilient, fighters and so so loved!
“Celebrate every tiny milestone with us… The bloods that didn’t clot. The X-rays that came back good. The ECG that’s normal for our warriors. Getting to 92% oxygen on their own! Having open heart surgery, then getting up and walking a few days later! Getting pacing wires removed with no issues (unless you’re Elijah!) Constant echo’s to say everything looks good! (Or sometimes not…) These are our lives and we celebrate together…
“We mourn the children who grew their wings far too soon. We lean on each other for those words of support.
“Live for the moments, live for today…because tomorrow is never promised!
“Also, please, if you can donate to Children’s Heart Surgery Fund. These amazing people are so invaluable to us parents. Helping us in our time of need with accommodation at the hospital, grants, food vouchers, emergency packs, toiletries, amazing support and family fun events.
“But most importantly for us Katie Bear teddies for our open heart surgery warriors, a medal and a certificate!
“Elijah I love you so much son. You keep proving people wrong. You keep going with the fight. We’re right by your side little warrior!”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Elijah every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
Last year, Freddie was the first child in the UK to undergo the innovative Yasui repair instead of the Fontan.
Freddie was born with Hypoplastic Left Heart Syndrome and a large VSD and since 2016 had already overcome multiple heart surgeries.
Mum Casey shares Freddie’s awesome story of resilience, and how their family have been supported by CHSF throughout their journey so far…
Freddie mum, Casey, said:
“When I went for my 20-week scan back in 2016 it never once crossed my mind that there may be a complication, but there was. What I now know to be a large VSD (ventricular septal defect), in my baby’s heart.
“The left-hand side of the heart hadn’t developed either. I was now learning all about Hypoplastic Left Heart Syndrome.
“In March 2017, Freddie was born and at 6 days old went for his Norwood surgery. 6 weeks and many complications later, we were home knowing it wouldn’t be long before we were back for another surgery.
“At 8 months old (October 2017) came the Glenn, and in 5 days my warrior of a son made it home again. It nearly felt like life had finally begun for him, but we had the Fontan hanging over our heads for the next few years.
“By some miracle, the VSD had urged the left-hand side of his heart to stretch and grow and in June 2023 we got the call.
“Freddie would have his next surgery in August, but they were going to try a Yasui repair meaning he would have bi-ventricular function rather than single ventricular.
“His recovery was long and tough, and he fought so hard. He made it over every obstacle, and I am so proud to say 5 months later, Freddie is like a brand-new boy.”
“After a staggering 15-hour surgery, my son became the first child in the UK to have the Yasui instead of the Fontan. His recovery was long and tough, and he fought so hard. He made it over every obstacle, and I am so proud to say 5 months later, Freddie is like a brand-new boy and has a new lease of life! We are so excited about what the future holds!!
“Children’s Heart Surgery Fund were such a huge help to us whilst we stayed in hospital, not only once but 3 times over the last 6 years.
“From the smallest gestures such as a coffee voucher to bringing fans when it was hot and calling in just to say “hi” – it really is nice to see different faces when you’re stuck in the same four walls.
“Freddie struggled immensely during his last stay. His drains had to stay in for 4-5 weeks, he was in pain and his mood was low.
“The CHSF team would come in and play games with him, to take his mind away from the pain even if it was just 10 minutes.
“Being able to stay so close to Freddie and not travel back to Doncaster every day was also a godsend, it saved us hundreds of pounds on fuel and hotel stays.
“We truly are grateful for everything! Thank you!”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Freddie every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
Sally’s heart defect wasn’t identified until after she was born and had open heart surgery at 18 days to correct her CHD. Doctors at the Leeds Congenital Heart Unit stated that without this operation, Sally wouldn’t live past 6 months old.
Now 21, Sally has already achieved so much. She is passionate about celebrating and inspiring our youngest heart warriors, by showing them that the sky’s the limit…
Sally said:
“I was born on the 22nd May 2002 at St James University Hospital, where I was not long after transferred over to the LGI.
“I was born with a large VSD and Transposition of the great arteries (TGA) but my parents didn’t know that anything was wrong with my heart until I was born, as I came out the wrong colour.
“At 18 days old I had my operation. I had a VSD repair and an arterial switch, with the operation lasting 9 and half hours. My surgeon at the time was Mr Kevin Waterson.
“I attend the LGI for yearly check-ups as, so far, nothing has changed dramatically and my heart has stayed stable.
“We first heard of CHSF after I had my operation, as the Charity gave me my very own Katie Bear after my heart surgery that came with an official certificate.
“I still have my bear to this day and love her very dearly. I love that children get their own bear as it’s something that we can treasure for the rest of our lives. The Katie Bear given out now is very different to mine, but I like that mine is an earlier version as she’s special to me.
“I never let my heart condition be a restriction in life”
“Over the years Children’s Heart Surgery Fund has supported me and my family by always checking in on us when we get in contact, or by simply seeing staff around the hospital. They are always so kind and always love a good chat. I feel very supported by the charity as I can go to them with any query I may have.”
“Now that I’m older, I can support them even more by raising funds and volunteering for them at a variety of their events, which I thoroughly enjoy as I get to see all our heart warriors in their element.
“What I love most about the CHSF team is that they always allow me to share my story and achievements so that I can inspire our younger heart warriors to know not to let anything hold them back.
“Having my operation as a baby meant I was able to live past 6 months old – this allowed me to go to school, college and graduate university with a degree in BA Photography, with a grade of a 2.1. I was able to join Stagecoach performing arts school and do many performances over 11 years in many great venues across the UK. I’ve been on lots of school trips abroad to sing.
“My most recent trip was to New York last year with the art and design department of my university.
“I am now in a Leeds based choir called Leeds Vocal Movement where we rehearse once a week.
“These are only some of the many things I have been able to do. I never let my heart condition be a restriction in life for me – I often forget that my scar is there!”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Sally every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.