At CHSF, we a so grateful witness countless inspiring stories of strength and resilience from children and their families as they navigate the challenges of congenital heart conditions.
Sonny is just one of those children…
Sonny’s dad, Adam, writes:
“Our son Sonny has tricuspid atresia.
“He is now 8 and had his Fontan procedure on 19th May of this year.
“Thankfully Sonny made a very good recovery and was able to leave hospital two weeks later. He has continued recovering well.
“On the 2nd September we went to Hutfest which is a running event. Sonny entered the children’s fun run and managed to complete the 1 mile distance!
“This was a huge milestone for Sonny. Prior to his surgery, he struggled to walk up the stairs in our house without getting out of breath.
“Me and my wife, Caroline, are forever grateful to all the staff on Ward L51, especially to Miss Carin Van Doorn who carried out the procedure.
“Finally thank you to Children’s Heart Surgery Fund who helped us massively with the accommodation during the early days of surgery, plus being there on the ward regularly with gifts and entertainment.
“We just wanted to say a big thank you!”
We’re sure you’ll join us in celebrating Sonny’s extraordinary milestone, made possible by our amazing Leeds Congenital Heart Unit and the generous contributions of our CHSF supporters.
Well done, Sonny. Always keep going for gold!
Finley’s story
written by mum, Tamra
At 2:48pm on the 18th July 2022 our little boy, Finley Kenneth Peirson, was born.
After 6 hours of labour, we were over the moon with him. However, at around 8pm his oxygen levels dropped, and he was rushed to Scarborough’s Special Care Baby Unit, SCBU.
Here Finley was given two weeks of antibiotics. At the time, I unknowingly had Strep B, so I also got an infection and ended up being sent back to theatre to be re-sutured.
On Monday 1st August we thought we would finally be coming home. Unfortunately, that wasn’t the case…
At 5am, we received a call that Finley had massively deteriorated due to lack of breathing and had been put in an incubator.
They were completely puzzled as his infection markers had dropped, so multiple doctors had to check him over. One doctor was adamant he heard a heart murmur and so they called Dr Mac, the cardiologist.
Dr Mac found a defect on Finley’s heart so our little, two-week-old, boy was blue-lighted from Scarborough Hospital to Leeds General Infirmary (LGI) with the Enhance Ambulance Team. On arrival there was a team ready to scan our baby’s heart.
Finley was moved to the Special Care Baby Unit in Scarborough at just 6 hours old. At two weeks he was diagnosed with a heart defect and blue-lighted to the Leeds Congenital Heart Unit.
Finley went straight to the Neonatal Unit L43 for a detailed echo and, once this had been completed, a surgeon came to explain to us exactly what was happening with Finley’s heart.
Miss Carin Van Doorn, the Congenital Cardiac Surgeon, explained that Finley had what’s called supracardiac total anomalous pulmonary venous drainage (TAPVD) which means the pulmonary veins do not connect normally to the left atrium. Instead, the four pulmonary veins drain abnormally to the right atrium, through an abnormal connection.
“…we were given accommodation at in Brotherton Wing at the hospital, courtesy of Children’s Heart Surgery Fund. This was a godsend.”
Finley needed open heart surgery as soon as possible. He had taken two weeks to actually produce the symptoms properly and was rapidly going downhill.
Carin said it was actually the small duct in his heart that usually closes, but Finley’s had stayed open and that’s how he had survived for 14 days before deteriorating.
We were told theatre would be within the next couple of days.
At this point we were given accommodation at in Brotherton Wing at the hospital, courtesy of Children’s Heart Surgery Fund. This was a godsend as I’d only had surgery myself days before and was currently in a wheelchair and couldn’t walk or drive.
Finley had his surgery on the Wednesday, and then had around the clock care in the Paediatric Intensive Care Unit, L47 (PICU). By Friday he was moving to Ward L51, to the High Dependency area of the Children’s Heart Ward. Because of all the amazing staff on these wards, Finley finally got to go home on the following Thursday – staying a total of 24 days in hospital.
As first-time parents, we never imagined anything like this to happen when thinking about having our baby boy.
We owe so many people a massive thanks, especially Carin Van Doorn and her team for accomplishing the operation and saving our baby boy’s life. Multiple members of staff from all the Children’s Heart Surgery Fund wards looked after Finley for the 11 days he was in Leeds.
Finley still has a long way to go as he has a Cor Tritriatum* which the cardiac consultants are reviewing every three months, and a Coarctation of the Aorta which was found in April. This also means Finley needs more heart surgery which we are currently awaiting a date for.
*Cor triatriatum is a rare condition occurring when a child is born with a thin, fibro-muscular membrane subdividing either the left or the right atrium into three chambers.
PHOTOS: 1) Finley after open heart surgery with his special Panda 2) Finley with Mummy and Daddy before going for surgery 3) Finley recovering with new friend, Katie Bear 4) Tamra and Finley on PICU 5) Finley back on the children’s heart ward after surgery
If anyone wants advice, or support, please do get in touch as it is a very overwhelming experience to go through and talking to others helps massively if you are going through something similar.
“This is the tattoo I got done a month after Finley’s operation. I wanted something to represent him and everything he went through, and the charity just represented it all. The pandas are me and dad, plus Finley took his toy panda into theatre with him so it represents us as a family and what you guys did for us.” — Tamra
13 babies are born with heart disease every day in the UK, and on average around 400 children from Yorkshire, the Humber and North Lincolnshire need urgent open heart surgery at the Leeds Congenital Heart Unit each year.
CHSF are there to support each and every one of them, but are wholly funded by public donations, from people like you.
Children’s Heart Surgery Fund exists to support local heart warriors and their families. There is no better way to explain our charity than using a powerful story – like yours.
Please consider sharing your experiences to help others realise they are not alone, and spread awareness of congenital heart disease and the pioneering work of the Leeds Congenital Heart Unit.
MORE REAL STORIES
Charlie’s story
written by mum, Emma
On the 5th May 2021, our family felt complete after our son Charlie was born in the LGI at Leeds.
Everything went smoothly and we were so excited to maybe go home that day.
All those hopes quickly went out of the window when Charlie was acting unwell and lethargic, just 5 minutes after been born. He was cyanosed and not moving.
The amazing doctors quickly took him away from me to check him. He had a pulse ox check which showed he had lower levels of oxygen in his blood, at around 80%.
After nearly a day of horrendous worry and not getting better or knowing what was wrong, Charlie was diagnosed with supracardiac TAPVD (total anomalous pulmonary venous drainage).
This is where all four of the pulmonary veins are abnormally connected to the right atrium, instead of the left atrium.
Charlie’s was unobstructed which kept him with us longer while everyone was trying to find out what was wrong with him.
Unfortunately for the first 24 hours it was a guessing game to what was wrong as he wasn’t responding to any treatments, like antibiotics, CPAP oxygen or even the ventilator.
We felt so lucky to be at Leeds and they made a fast diagnosis after doing an echocardiogram at 1 day old.
Charlie was born with a rare heart condition called supracardiac total anomalous pulmonary venous drainage (TAPVD)
“I had a lot of support from CHSF. Their work towards families…is outstanding. They really feel like a family.”
We were heartbroken as we had no idea – it’s very hard to pick up on scans. But we were in the right place and had lots of conversations with the amazing cardiac team and consultants about what would be next.
Luckily this condition is fixable and can be repaired. This was the only thing we could cling onto in our vulnerable state.
Open heart surgery is the only way to fix TAPVD, so this was discussed, and we were then sent from the Neonatal Intensive Care Unit (NICU) to the children’s heart ward – L51.
It can be very scary entering a new environment after spending some time in another ward but as soon as we came to Ward L51 we were greeted with such love and care from the nurses and the whole team. We got our own room with Charlie, and we then waited there for a few days before they decided surgery needed to take place as Charlie was getting tired.
In this video, Family Support Worker Sarah shows us around some key areas of the Leeds Congenital Heart Unit including NICU and Ward L51 mentioned above, as well as our family accommodation.
13th May 2021. 8 days old and ready for his life saving surgery. We were a mess, but we had all our faith and trust in the amazing team and Mr Giuseppe Pelella who was Charlie’s surgeon. Mr Pelella came to see us, and we ran through what would happen in surgery.
We then met Children’s Heart Surgery Fund! What a breath of fresh air this lovely team are. I was in a very bad place, and I had a lot of support from CHSF. Their work towards families, whether it be just support or organising somewhere to stay if you don’t live close by, is outstanding. They really feel like a family.
We got the call to say Charlie was out of surgery and all went really well! He was repaired.
We couldn’t believe it. Of course, he needed to be very closely monitored for the next few days in PICU (Paediatric Intensive Care Unit) but we were just so thankful he was out of surgery.
The next few days felt like a blur, mixed with no sleep and worry. But the nurses were amazing and used to message us through a special app to tell us how he was doing in the night – fortunately we got good updates.
After three or four days Charlie got to transfer back to ward L51 in recovery to get home! He did well but just needed to gain some weight. After only 10 days post-surgery, we got to bring Charlie home!
Three weeks from being born, to being diagnosed, waiting for surgery, having the surgery and recovering. We couldn’t believe it, and we were so grateful.
Fast forward two years and he is the cheekiest little man you’ve ever met. He has been set to 18-month check-ups for now.
He is extremely happy, active, and always on the go! He runs me ragged but we wouldn’t change him for the world.
We hope that Charlie continues to be as well as he has done so far.
13 babies are born with heart disease every day in the UK, and on average around 400 children from Yorkshire, the Humber and North Lincolnshire need urgent open heart surgery at the Leeds Congenital Heart Unit each year.
CHSF are there to support each and every one of them, but are wholly funded by public donations, from people like you.
Children’s Heart Surgery Fund exists to support local heart warriors and their families. There is no better way to explain our charity than using a powerful story – like yours.
Please consider sharing your experiences to help others realise they are not alone, and spread awareness of congenital heart disease and the pioneering work of the Leeds Congenital Heart Unit.
MORE REAL STORIES
written by heart mum, Natalie
We were introduced to the amazing CHSF on 14th April 2022 in Leeds when our daughter, Isabelle, was 5 months old.
We went for a routine hospital check-up in Hull on 12th April with a suspected heart murmur and it was then that we were told Belle had Tetralogy of Fallot (ToF) and Ventricular Septal Defect (VSD).
Fast forward 48 hours and we were seen by the most amazing Cardiology team at Leeds General Infirmary and they explained that without surgery, Belle would only survive into her teenage years.
With all the emotions running through our head we thought we were on a rollercoaster.
“Why us?”, “What did we do to deserve this?”, “Was it my fault? Had I done something wrong in my pregnancy?”.
We agreed to go onto a cancellation list, and Belle had her surgery just three weeks later in Leeds on 4th May 2022.
While we were in Leeds, we were given the details for Children’s Heart Surgery Fund and the private Facebook page they have for patients and families.
The nurses arranged for CHSF to send Eliza, our 5-year-old daughter, a little book about going into hospital. This explained nicely what was going to happen to Belle while she was in Leeds for 5-14 days.
When we got the call on the 3rd May to say a cancellation had come up, we headed to Leeds straight away. We grabbed as much we could from home and attended Ward L51 – and we were absolutely blown away as soon as we went onto the ward.
We were told not to book a hotel as there was accommodation there for us, funded by CHSF. My partner, Jonny, and I just burst into tears. The accommodation we had was lovely and allowed us to be so close to Isabelle while she was on PICU and High Dependency.
It was such a relief knowing we were only a few minutes away if we needed to be with Belle urgently. We had the accommodation for a total of six days which, as well as a bedroom, had a kitchen and laundry room if we needed it.
Also, all children are given their very own Katie Bear with a certificate and medal after open heart surgery. Another beautiful gesture from CHSF.
The reason we decided to take part in the Superhero Walk last year is because we wanted to give something back to this amazing charity. We raised a total of £405 – which could help families like us stay in the hospital accommodation for 14 days.
It was so lovely to meet all the other families at the event and talk to them about our little miracles. It was such a lovely, fun-packed day.
I set up a JustGiving page and shared this on social media with our story. Only a handful of people knew about Belle and her surgery, and our donations started to come in.
If anyone is thinking about doing the Superhero Walk my answer is YES, please do! Jonny, Eliza, Belle and I will be doing it again this year and we can’t wait to meet and catch-up with all the families.
Thank you CHSF from the very bottom of our hearts. We are truly grateful for everything that you do, and carry on doing xxx
Superhero Walk is an annual fundraiser and family fun day. We encourage young heart warriors and families to dress as their favourite superheroes and get sponsored to walk the 1km route!
When?
Sunday 10th September, 11am – 2pm
Where?
John Charles Centre for Sport, Leeds, LS11 5DJ
Heart warrior Callie-Mae recently featured on BBC documentary ‘Saving Lives In Leeds’.
In the final episode of the series, we followed Callie’s story as her family prepared for her to have open heart surgery, performed by surgeon Osama Jaber at the Leeds Congenital Heart Unit.
Now age 1 and nearly walking, Callie is thriving!
We caught up with Callie’s mum Amanda who told us a bit more about their experience at Leeds, and how the family were supported by Children’s Heart Surgery Fund during that time…
At my 20-week scan in Hull, we went in expecting to just see our beautiful girlie on the screen – we already knew she was a girl from a private scan two weeks earlier.
When I laid on the bed the lady was going over my tummy with the probe and smiling away telling us the measurements etc. Then it came to her heart…and she stopped smiling and went quiet.
Although from Hull, Callie-Mae had open heart surgery at Leeds General Infirmary because of its specialist heart unit.
Finally, she spoke and said she was having trouble getting the measurements of baby’s heart and she was going to go get someone to help. Another lady came in and had a go at the ‘measurements’. Ryan, Callie’s dad, and I knew something was wrong by their faces.
When they stopped the scan, they said to us “we think there may be an issue with the baby’s heart”. They said that we would have to come back in a few days to have another scan with a senior sonographer.
The day came around and we returned to the hospital to be re-scanned. It was then we were told our baby had congenital heart disease – Transportation of the great arteries (TGA) and multiple VSD’s. They said that our care would now be transferred to Leeds General Infirmary as Leeds had a specialist heart unit.
Once at Leeds we were told in detail what would happen at the birth, how Callie’s operation would go and the rough timing of everything.
Sarah from Children’s Heart Surgery Fund came to see us after Callie was born, to check how we were doing. Sarah is the Family Support Supervisor at CHSF.
While I stayed in Leeds with Callie, my husband Ryan was doing trips to and from Hull to see us as much as he possibly could. Once Sarah found out we lived so far away, we were given food vouchers and money into my bank to help with all the costs. This was amazing as it really was costly staying in hospital with Callie, and Ryan travelling from home and back in the car.
“As a family we were shocked and scared by Callie-Mae’s diagnosis, but in time we have learnt that she’s still going to grow and have an amazing life.”
Callie was given her Katie Bear teddy, medal, and certificate after she had surgery, which we will treasure forever. These are given to every child who has open heart surgery at Leeds.
We were also given accommodation at the hospital, first in Brotherton Wing and then at Eckersley House, which again was a weight lifted from our shoulders.
The accommodation meant I wouldn’t have to go home when our little girl was fighting in hospital. Plus, at the time I was breastfeeding so it wouldn’t have been possible for me to be in Hull and Callie to be in Leeds, where she needed to be for treatment.
Every child who has open heart surgery at Leeds receives a Katie Bear teddy from CHSF, as a reminder of their bravery and strength.
Since we left hospital, Callie has thrived and grown so much. I’m so proud of her. She only had to go back to Leeds once, in December last year, to have a band removed from her heart which was placed during her first surgery.
Now age one, Callie has been attending Children Centre play groups and has been making lots of baby friends, who she loves to see.
As a family we were shocked and scared by Callie-Mae’s diagnosis, but in time we have learnt that she’s still going to grow and have an amazing life with her siblings (Kaylub, Kyle, Kody and Charlotte) and extended family.
We will be forever grateful for the help we received in Leeds.
1. Callie-Mae at play group, 2. Callie-Mae with her four siblings, 3. Callie-Mae age one
Watch the full episode of Saving Lives in Leeds, featuring Callie-Mae and surgeon Osama Jaber here.
Callie-Mae is just one of the 500 babies and children who need open heart surgery at Leeds every year, and joins the 17,000+ patients from across Yorkshire, The Humber, N.E Lincolnshire and North Derbyshire who are treated by the Leeds Congenital Heart Unit.
Children’s Heart Surgery Fund have been supporting our heart unit for 35 years and we want to ensure we are there for our region’s heart warriors and their families for life.
MORE REAL STORIES
Mabel’s Story
written by mum Jess
Meredith and Mabel were born 2nd June, but Mabel’s CHD diagnosis wasn’t discovered until 24 hours after birth.
She had severe aortic stenosis and coarctation of the aorta. Despite being Mabel’s identical twin, her sister Meredith did not suffer the same condition.
Mabel travelled to Leeds and had the catheter balloon surgery three days later which was thought to be successful.
Weeks later, at a review appointment, we were told the surgery effectively failed and due to the narrowing of the valve and blood struggling to pass through the valve and the artery, her heart muscles had deteriorated and were seriously weak.
We went back to Leeds and Mabel underwent the Ross Procedure at 4 weeks old weighing only 2.5kg – the same as her birth weight.
They replaced her aortic valve with her pulmonary valve, and replaced the pulmonary vale with a bovine jugular vein. The artery was made larger using human donor tissue.
We were told the op should have taken approx. 6-8 hours, but she was in surgery for 13 hours, having bled out for the last four.
Miraculously her heart and lungs worked on their own after the surgery. She did go into kidney failure and suffered a bleed on the brain. We were told the effects of the bleed would not be known until she was older, and we needed to keep an eye on her developmental progress.
Since then, she had four-weekly reviews which went to three-monthly and at the last scan in August 2022, they told us that she could go down to yearly reviews.
The surgeons cannot believe the recovery of Mabel. They expected severe scarring from the stress her heart was under during the first four weeks of life but state that despite the small bit of scarring, the heart is working better than they ever could have expected.
“Just having someone with us, making sure we had everything we needed was more than we ever expected or imagined.”
The hospital suggested yearly reviews but (nervously!) I requested an earlier appointment rather than waiting a year and Mabel’s next scan will be in June, around her second Birthday.
Mabel is slightly smaller than Meredith and around two weeks behind developmentally – we put this down simply to time under sedation. Who knows?
She is smashing each and every milestone, and more. She is a daredevil, crazy, hilarious, entertaining and a total rogue.
You always think stories like this happen to someone else until it happens to you. I had no idea how common heart defects in children are.
Before Mabel was even taken to Leeds Children’s Heart Surgery Fund were working behind the scenes to secure me, Gareth and Meredith accommodation at Eckersley House in the Hospital grounds, free of charge.
Someone from the charity would drop in on us regularly at the hospital providing emotional and financial support, including: accommodation, petrol money, food vouchers for the nearest supermarket to the hospital, offering us counselling.
Just having someone there by Mabel’s hospital bed with us, making sure we had everything we needed was more than we ever expected or imagined.
“I know that CHSF will be there with us every step of the way”
During the worse moments of our lives, thanks to the donations given to CHSF, the Charity were able to take away the stress, worry and logistics of finding somewhere to stay and the general expense that goes with it.
This allowed us to focus solely on Mabel and her recovery.
CHSF also provided Mabel with a Katie Bear teddy, a medal and a Certificate that included her surgeon’s name. These thoughtful and generous treasures will help us explain to Mabel her incredible story for years to come.
We are told Mabel will need the same Ross Procedure again maybe 2 or 3 times by the time she reaches adulthood, and I know that CHSF will be there with us every step of the way on each occasion.
A simple “thank you” in return for all that Children’s Heart Surgery Fund has done for us, and so many other families, seems so insignificant.
To say thank you for the support his family received, Mabel’s dad Gareth took on the formidable Three Peaks Challenge last year with a group of friends to raise funds for CHSF.
Feeing inspired? Head over to our Events page which is full of ideas to generate life-saving funds for the Leeds Congenital Heart Unit all year round! Got an idea already? Let us know using our fundraising registration form.
Jess Family Law Chosen Charity
Heart mum Jess runs Jess Family Law and is a self-employed Family Law Consultant.
We are so grateful to Jess for picking Children’s Heart Surgery Fund as the chosen charity for Jess Family Law.
Millie’s story so far
written by mum Emma
At my 20 week scan we heard the dreaded news “I can see an issue with the heart”.
At that moment our whole world came crashing down and my thoughts straight away were, “Will she be ok?”, “What will happen now?” and “Why is this happening to us?”.
The type of heart condition Millie was diagnosed with was Atrioventricular Septal Defect (AVSD).
That was when we were also told that with the condition there was also a 50% chance of Millie having Down syndrome.
We had the tests done and it was confirmed that Millie had Down syndrome.
It was a hard time for us, but we knew we would be keeping Millie regardless of her diagnosis.
Everything seemed to happen so quick. We were in Leeds the very next day to see the team, who were fab. We felt reassured that even though Millie had an AVSD it could be fixed.
Roll onto Millie being 11 months old. The day had finally come for her first heart surgery – 17th May 2018.
It was the worst six hours of our lives waiting for the phone call to say that all was ok. The operation all went well, and we can’t thank Mr Jaber and his team enough!
It was then that Millie received her first Katie Bear from Children’s Heart Surgery Fund.
Millie did have more open heart surgery, on 14th September 2020. Again, this was by the amazing Mr Jaber and his team.
“Millie is doing so well in school and she doesn’t let anything get in her way!”
Millie got a second Katie Bear which was a total surprise and so lovely.
After both surgeries, Millie bounced back and was back to her usual self within days!
She is doing so well in school, and she doesn’t let anything get in her way!
Millie is now five and has been on quite a journey already. She does need to have further surgery, but we know she will be in good hands and the worries that we have can be pushed to the back of our minds until that day comes.
Did you know – approximately 50% of all infants born with Down syndrome are also born with a heart defect?
A huge thank you to heart mum Emma for sharing Millie’s story to raise vital awareness of Down syndrome and congenital heart disease.
13 babies are born with heart disease every day in the UK, and on average around 400 children from Yorkshire, the Humber and North Lincolnshire need urgent open heart surgery at the Leeds Congenital Heart Unit each year.
CHSF are there to support each and every one of them, but are wholly funded by public donations, from people like you.
MORE REAL STORIES
“The support we received from CHSF as well as all the Leeds Congenital Heart Unit staff meant so much to us. We are truly grateful to this wonderful charity.“
written by mum Jessica
Our son Abel was diagnosed with Tetralogy of Fallot after our 20-week anomaly scan showed his heart had not formed correctly.
We then had regular scans at the LGI and he was delivered at 37 weeks.
Thankfully he was well and had good oxygen levels, so we were allowed home after two days.
Abel continued to have monthly heart echo’s up until his surgery in July 2022, at 13 months old.
Children’s Heart Surgery Fund were such a big help to me and my partner.
They provided us with accommodation in the hospital for three days during Abel’s stay in PICU. It was great peace of mind that we could both be close to him and that we could visit Abel at any time of the day.
The support we received from CHSF, as well as all the Leeds Congenital Heart Unit staff at Leeds Children’s Hospital (Ward L51) meant so much to us. We are truly grateful to this wonderful charity.
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region. We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
Feedback from heart patients and families tells us your story will help others dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
“Without Children’s Heart Surgery Fund, Reggie wouldn’t be here.”
Michelle, Reggie’s mum
Written by Reggie’s mum, Michelle
Reggie was born on the 1st September 2016 with a palliative congenital heart disease called hypoplastic left heart syndrome. Although you might not know to look at him, Reggie’s heart is extremely poorly.
When we had his diagnosis at 20 weeks, we were given three options: abortion, comfort care or surgery. We chose surgery as we needed to let him have that chance.
Congenital heart disease is the biggest childhood killer, and Reggie is high risk for things like stroke, cardiac arrest, endocarditis…
Although we knew the possible outcomes, we still wanted to let him have the chance. We say that it’s his fight. When he’s tired, that’s his choice to stop! We will guide him as much as we can.
At four days old, Reggie needed his first open heart surgery. The operation was nine hours long. After three days, he needed to go back to theatre and be opened up again due to an infection. He came home in October, just in time for his mummy’s birthday.
In March the following year, Reggie needed another open heart surgery. He was so strong, but he had a really tough time with another infection, this time in his PICC line. We were home after eight days.
It hurts every day knowing that this CHD could just randomly take him unexpectedly or that when he needs a transplant, will he manage to hold on?
Imagine waking every day knowing it could be your child’s last.
Now age 6, Reggie is waiting for his final surgery.
He’s been on the list for the last year, but we haven’t had the call just yet with COVID and new babies being born with CHD that have taken priority.
Children’s Heart Surgery Fund are amazing. If you could donate this Wear Red Day, even if it’s £1, it will go towards saving a child like Reggie. Thank you.
Please register to take part in Wear Red Day this year, so you can help us raise vital fund and awareness to support children like Reggie. Thank you.
written by Sian’s sister, Rachael
My son Samuel was born on 30th October 2014 in our local hospital. It was clear straight away there were complications, but no one was sure what they were.
Following various tests, he was transported later that day to the cardiac ward at Leed’s Children’s Hospital. Here he was diagnosed with transposition of the great arteries and a coarctation. He was supported in PICU for two weeks until he was ready for heart surgery.
The team at the Leeds Congenital Heart Unit provided Samuel, and us, with incredible support through this stay in hospital. His life saving surgery was long and complex, performed by Mr Jaber and his team.
Sian, with her nephew Samuel
What an incredible job they did! Following four weeks in the care of the staff on the cardiac ward, Samuel came home. He continued with regular checks for the first year and the support team were always there on the end of the phone. He now sees a consultant every two years for routine check-ups.
Thanks to everyone involved, Samuel thoroughly enjoys a very active and incredibly happy, healthy life and we will all be eternally grateful for the expert care and attention that he received during a very challenging time.
My sister Sian was an amazing doctor and dedicated Aunty. Her professional career was committed to working and improving the lives of children.
For all of these reasons we chose Children’s Heart Surgery Fund to be nominated as the charity for donations to be made in her memory. We are very grateful for the generosity of her family, friends and colleagues and hope that the funds raised will continue to make a difference for other children that benefit from the work of CHSF, just like Samuel did.
A wonderful £1,173 raised for our heart unit, patients and families in memory of Sian Firth.
Thank you so much to all of Sian’s family, friends and colleagues for thinking of Children’s Heart Surgery Fund at such a difficult time.
We are so very grateful for your generous donation in support of our work supporting hearts for life.
We can only do what we do because of people like you. Thank you.
Donating in memory is a touching way to remember a loved one, celebrating their life and supporting a cause which was important to them. You can read more about donating in memory here or get in touch with the team on 0113 831 4810 | info@chsf.org.uk