This is Karim’s story, shared by mum Kamila. Karim was born in Scunthorpe and was blue-lighted to Hull and then Leeds after a congenital heart defect was discovered.
Children’s Heart Surgery Fund supports the Leeds Congenital Heart Unit, helping provide the care and equipment needed throughout his treatment.
“Throughout my pregnancy I was closely monitored because of my type 1 diabetes, having weekly scans from 26 weeks until I gave birth. Every time I was reassured that my baby boy was healthy.
“On the 4th April at 10:14am, our beautiful boy Karim was born. He cried for just five seconds… and then suddenly everything went silent.
“I remember lying there asking my husband, ‘Is he okay? Why haven’t they shown him to me?’ Within minutes the room filled with doctors. I was told he needed 100% oxygen and had to be taken straight to NICU.
“Because I had a C-section, I didn’t get to see my baby until eight hours after he was born, when the Embrace team briefly brought him to me before transferring him to Hull. I only had 20 minutes with him and, with all the wires covering his tiny body, the only thing I could gently touch was his little nose. Then he was taken away. That night my newborn baby and I were in two different cities – the hardest night of my life.
“24 hours after giving birth, I finally got to kiss my son for the first time, but he still couldn’t breathe on his own. Soon after, we were told he needed to be transferred again to Leeds after doctors found an abnormality with his heart.
“At Leeds Children’s Hospital we were told Karim had a rare heart condition called TAPVD and ASD. At just three days old, he needed open heart surgery the next morning – his only chance of survival. Hearing those words broke my heart, but I put my full trust in Allah SWT. When I met Karim’s surgeon, Dr Pelella, I felt a sense of calm and hope.
“Karim’s recovery was a rollercoaster, but he proved to be a true warrior. His surgery was successful thanks to the incredible surgeon and the amazing teams at PICU L47 and Ward L51. I will forever be grateful to every doctor and nurse who helped save my baby’s life.
“During this time we stayed at Eckersley House so we could stay close to Karim during the hardest time of our lives. Being surrounded by other families going through similar journeys reminded me that we weren’t alone.
“Today I look at my baby boy with nothing but pride. He is my little fighter, and I will forever be proud of him.
“The amount of support I got from Children’s Heart Surgery Fund during this extremely difficult period felt like a sense of calmness in the midst of all the chaos. I’m eternally grateful for all the support I have received from them and couldn’t have done survived the way I did without them!”
Your donations provide the ‘calmness in the chaos’ for heart families from all across our region facing CHD.
Please help us continue to support more families who need us.
This is Mabel’s story, shared by her family after discovering complications with her heart during pregnancy.
Children’s Heart Surgery Fund supports the Leeds Congenital Heart Unit, helping provide the care and equipment needed throughout her treatment.
written by mum Leah
“At our 20-week scan, I attended alone as I worked in the clinic and Brad was at work. I had encouraged him not to take time off, never imagining I would receive life-changing news by myself.
“It was at this appointment that we were told something was wrong with Mabel’s heart, and we were referred to Leeds for a fetal echocardiogram.
“We then had to wait all weekend for that appointment, not knowing what we were facing – feeling helpless, terrified and completely heartbroken.
“The echo showed a hypoplastic aortic arch (coarctation of the aorta), a large VSD and a smaller left side of the heart, although it was still adequate.
“We were offered termination but chose to continue and clung to hope as we had regular echos, praying her left side would grow and not develop into Hypoplastic Left Heart Syndrome (HLHS).
“Every scan filled us with fear, never knowing what news we would be given.
“At 28 weeks, we had a scare with suspected fetal hydrops and truly believed we might lose her. An amniocentesis was carried out but thankfully came back clear. An MRI at 34 weeks confirmed her hypoplastic arch was very narrow, her VSD extremely large, and her left side still small but continuing to grow. We had to plan her delivery at LGI so the cardiac team could be ready for her arrival.
“Our little fighter entered the world ready for her battle and had open heart surgery at just five days old to repair her hypoplastic arch and have a PA band placed until her next surgery to close her VSD. The surgery went well, but due to pulmonary artery pressure her chest had to be left open for a few days before being closed.
“Mabel is now recovering, but she still has a long and challenging path ahead. She will always need lifelong cardiac follow-up and may face further surgeries in the future, but she is strong, brave, and defying the odds every day – our precious 1 in 100.”
By supporting CHSF, you ensure we can keep being there for children like Mabel and her family.
We can’t do it without your support.
Florence’s journey into the world of congenital heart disease began long before her family were ready for it.
What followed was a difficult mix of fear, medical decisions and tiny moments of hope that carried them through.
Mum Kelly, from Halifax, said:
“Florence’s journey began before we were ready. Hearing the words ‘congenital heart defect’ changes everything in a second. What were already challenging days became a nightmare filled with monitors, oxygen levels, medical language and decisions no parent ever imagines making. There were moments of fear and desperation that took our breath away. Watching our beautiful, small but mighty warrior fight. There was hope – we prayed and held on to hope from the beginning.
“From diagnosis through treatment, it has been a world of hospital corridors, specialists, waiting rooms and holding her tiny hand while she faced things far bigger than her. But it has also been a journey of resilience. Florence is stronger than we ever knew a human could be. She has taught us what courage really looks like.
“Children’s Heart Surgery Fund made us feel less alone. In a world that can feel isolating and overwhelming, they provided practical support, reassurance and a sense of community. We were part of a club no parent wants to be a part of, but their presence, compassion, kindness and thoughtfulness kept us going.
“Knowing there were people who understood the unique fear and strength of heart families made an enormous difference. They didn’t just support Florence, they supported us as parents who were trying to stay standing through it all.
Why should people support CHSF this Heart Month / Wear Red Day?
“I think it is so important that people support CHSF this Heart Month because behind every statistic is a child like Florence. A tiny chest with a fierce, determined heart.
“Supporting CHSF means supporting families like us at the worst time of our lives, in crisis, and reminding heart warriors that they are seen.
“Wearing red isn’t just symbolic it’s solidarity. It’s saying these children matter. Their fight matters. CHSF are an amazing charity that makes a REAL difference, and we are forever grateful to be part of this club.
“To other heart families: you are not alone. The fear, the exhaustion, the guilt, the love that feels almost unbearable, it’s all part of this journey. You are stronger than you think. Your child is stronger than you know. Take it one hour at a time, even minute by minute. Hold their hand. Let others hold yours when you need it the most. Reach out and keep talking. There is hope even in the hardest days.”
Wear red in Feb for the thousands of children in our region like Florence Dottie!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
“The time in hospital was a very scary time and the resources that CHSF provide are invaluable.
“CHSF is an amazing resource for children with congenital heart disease and their families!”
Mum Sarah, from Grimsby, said:
“Our local hospital discovered Rowan had a Ventricular septal defect (VSD) at birth before we went home, but we were told it would likely close on its own.
“He was then diagnosed with a condition called Pyloric stenosis, and at nine weeks old was rushed to Sheffield Children’s – needing surgery on his stomach. Before the operation could happen, the anaesthetist needed to review his heart echo (echocardiogram), however our local hospital seemed to have lost the images/report.
“Sheffield decided it would be quicker to carry out their own echo. In doing so, they found that Rowan’s VSD was more complex than was originally discovered, meaning we had to wait for a paediatric cardiologist to come over from Leeds Congenital Heart Unit as that was our local specialist heart centre.
“The Cardiologist that came from Leeds was brilliant. We were unsure as to whether he would have to be transferred to the Leeds Congenital Heart Unit for cardiac surgery, as well as the surgery on his stomach, but after speaking with the cardiologist, we were reassured that it was safe for Rowan to have his surgery in Sheffield, and he did not need immediate surgery on his heart.
“From this point on, Leeds kept a close eye on Rowan’s condition – making sure he was always seen in the joint clinics when they visited our local hospital. For years his condition did not change, however when he was about six, they discovered a change and this then meant he needed surgery to repair the hole in his heart.
“This was done in September 2025, when Rowan was seven years old. The Leeds Congenital Heart Unit was absolutely brilliant from start to finish. The children’s heart ward (Ward L51) was amazing, and the support from CHSF made the whole experience so much easier to handle as parents of a heart warrior.
“The time in hospital was a very scary time and the resources that CHSF provide are invaluable. Parent accommodation was the most important, so we had somewhere to sleep whilst Rowan was in PICU and HDU.
“Getting a Katie Bear teddy, medal and certificate afterwards was something Rowan really cherished and is very proud of.
“Feeling part of a community after the surgery as well is something that I’m grateful for and never expected.
“Rowan still has a leak in his tricuspid valve, and may need more surgery in the future, but hopefully it will be many years before he does. We are forever grateful to Leeds for making sure Rowan was given the correct care!
“CHSF is an amazing resource for children with congenital heart disease and their families!”
Wear red in Feb for the thousands of children in our region like Rowan!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
“After 7 weeks in hospital, we are finally home with our little girl – Honey.
“Honey has been through more in her first 7 weeks of life than most of us will in a lifetime.
“Born with a heart defect – coarctated aorta – she’s battled a chest infection, a stomach infection, and a 6-hour open heart surgery to repair her heart.
Coarctation of the aorta means part of the main artery in the body is narrower than it should be. The narrowing stops blood from flowing as easily as it should, so the heart has to work harder to pump blood through the body. This can cause the left ventricle (one of your heart’s main pumping chambers) to become thicker and your heart to become weaker.
“Through it all she has shown a strength that we can only describe as incredible. She will have a scar, but that scar will always be a testament to her bravery and how hard she has fought from day one. We couldn’t be prouder of her.
“We want to publicly thank all of the amazing staff at Leeds Children’s Hospital who cared for her over the past 7 weeks. You truly are unbelievable at what you do. A special thank you to Dr Jaber, who performed the life-saving operation that has given her the chance to live a long and healthy life.
“We’re also so grateful to the Children’s Heart Surgery Fund for their support, and to our close friends and family who have helped us more than they probably realise during this time.
“Now we’re finally home, we can start being a normal family and focus on what really matters – making memories together.”
— Honey’s parents, Connor & Kate
Because of you, we can keep being there for heart heroes like Honey and their families.
By making a donation to CHSF you are ensuring vital funding to the Leeds Congenital Heart Unit and personalised support to families when they need us most.
“I realised there is a whole community of heart warriors and incredibly strong parents who truly understand this journey.
“There will be hard days. There will be moments of fear and exhaustion. But there will also be strength you never knew you had, love that carries you through and people who step in to support you when you need it most.”
Mum Shakeelah said:
“When I found out about my son’s diagnosis antenatally, I really struggled to come to terms with it. I had never heard of congenital heart disease (CHD) before. During my appointments, I never saw any other families going through the same thing, which made me feel like this must be very rare. I felt alone.
“As a diabetic, I blamed myself. I kept thinking this was my fault and that I had somehow caused my baby’s heart condition. I didn’t know any other families affected by CHD, so I had no one to relate to or share my fears with.
“I was in close contact with CCNS Marie Wray, who answered all my questions and was incredibly supportive during such an overwhelming time. When I was waiting for a NICU bed to become available, I met another family whose child also had CHD. For the first time, I felt like I had someone who truly understood my anxieties and fears.
“After delivering my son, he was taken straight to NICU. When he was later transferred to HDU, someone from CHSF left a bag of essentials for me, even though I wasn’t present at the time. That small act of kindness meant so much.
“I also met Sarah (Head of Family Support) on several occasions. From the moment we spoke, I felt like I had known her for years. She immediately put me at ease and supported me through such a difficult period. Having that emotional support made an incredible difference to our journey.
“CHSF supported us financially during an incredibly stressful time. They provided money for fuel and Tesco vouchers, which made a huge difference when we were travelling back and forth to the hospital and managing everyday costs alongside everything else.
“There were moments when I felt completely emotionally drained and overwhelmed. At one point, I had run out of basic toiletries. I reached out to Sarah, and she brought some in for me and discreetly handed them over. That small, thoughtful gesture meant more than I can explain. It wasn’t just practical support – it made me feel cared for, understood, and not alone.
“I think people should support Wear Red Day to raise awareness of how many babies are affected by congenital heart disease every single day. Before my son’s diagnosis, I had never even heard of CHD. The more awareness there is, the more families will understand that they are not alone.
“Greater awareness also helps ensure that our children are treated equally and with understanding. Children with CHD should not be labelled or defined by their condition. They are strong, brave heart warriors who deserve the same opportunities, compassion, and inclusion as any other child.
“By supporting Wear Red Day, people are not just wearing a colour – they are standing with families like ours, helping to spread knowledge, reduce stigma, and show that every heart matters.
“To other CHD families – you are not alone, even when it feels like you are.
“I realised there is a whole community of heart warriors and incredibly strong parents who truly understand this journey. There will be hard days. There will be moments of fear and exhaustion. But there will also be strength you never knew you had, love that carries you through and people who step in to support you when you need it most.
“Be gentle with yourself. Ask questions. Reach out for help. Accept support when it’s offered. You are doing the very best you can for your child.
“Our children are stronger than we ever imagined – and so are we. Sending love and strength to every heart warrior and their family.”
Wear red in Feb for the thousands of children in our region like Abdul Mu’eed!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
“Everyone was absolutely incredible supporting us through every hurdle – there certainly were a lot!
“There is no way we would’ve gotten through it without the Children’s Heart Surgery Fund team.”
Mum Katie, from Bridlington, said:
“When Vincent was 9 days old, we were admitted to Scarborough hospital as he was extremely jaundiced.
“Upon doing his admission the nurses discovered his oxygen levels sat around 60-70.
“Within minutes the room was flooded with doctors trying to figure out why.
“He had a heart scan within the hour, and the doctors told us the left side of his heart was small and that blood wasn’t being pumped around his body properly.
“We were then transferred into the special baby unit and sent to Leeds that night, arriving around 3am.
“By 7am we were taken aside and they told us that Vincent had obstructed TAPVD and a hole in the centre of his heart. The lack of oxygen to his liver was causing his jaundice, and they had to operate urgently.
“On the lead up to his surgery they explained that they would need two specialist heart surgeons as Vincent’s case was quite difficult. They’d need to place him on bypass and actually take his heart out of his chest and flip it over to perform the surgery.
“As soon as we saw Vincent after surgery was complete, he was like a brand new baby – oxygen levels at 99, no longer yellow and purple and seemed to be doing incredibly.
“We did have a few complications. He began having apnoea’s, seizures and SVTs which were only resolved with medication. Due to this they did an urgent scan and found some damage to his brain.
“Everyone was absolutely incredible supporting us through every hurdle – there certainly were a lot!
“There is no way we would’ve gotten through it without the Children’s Heart Surgery Fund team. Anything we needed they did their absolute best to help, even if it was just a chat.
“Fast forward to now you would never ever know what this boy has been through. He is the happiest and most incredible boy. Hitting all of his milestones and proving nothing can knock him down!
“We will forever be grateful for every single person who helped us on Vincent’s heart journey.”
Wear red in Feb for the thousands of children in our region like Vincent!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
From a prenatal diagnosis to multiple life-saving surgeries, this blog shares Sienna’s incredible journey with Hypoplastic right heart syndrome (HRHS) and the care that carried her through.
It also highlights the vital support her family received from Children’s Heart Surgery Fund every step of the way.
Mum Becky, from Sheffield, said:
“We came into this journey when I was around 23 weeks pregnant, when our local hospital found that Sienna’s right side of her heart hadn’t developed properly. She was diagnosed with Hypoplastic right heart syndrome (HRHS).
“We were referred to Fetal Medicine at Leeds, nervous for the journey ahead.
“I delivered Sienna in Leeds which was scary as we’re from Sheffield – I was induced and she was born naturally with a great labour.
“At birth, and after a quick cuddle, Sienna was taken to the neonatal unit. Sienna did extremely well and didn’t require any oxygen when she was born.
“She was fitted a NG tube to support her feeding and was given Prostin.
An NG tube is a small tube that is passed up your baby’s nose and down into the stomach. The tube is used to give milk and or medicine when a baby is unable to take everything they need orally.
‘Prostin’ (alprostadil) is a medication used in neonates with certain congenital heart defects to maintain the patency of the ductus arteriosus, which is often administered via continuous intravenous infusion.
The Glenn procedure“Sienna then had a BT shunt fitted a few weeks in. The shunt is a small tube put in that delivers blood flow to the lungs. She needed a trip to PICU as Sienna doesn’t do anything easy! This allowed her body to rest and then she then stabilised as she had time to get used to her new circulation.
“A couple of weeks staying on the ward to put weight on and then Sienna came home.
“At seven months old Sienna had her Glenn surgery. After this we had visits to the Cardiac High-Risk Clinic every two weeks. She was discharged on 24th October last year. We now have six-monthly follow ups until Sienna is ready for her Fontan.
directly connects a major vein (superior vena cava) and a child’s pulmonary artery. This lets oxygen-poor blood from the upper body go straight to the lungs to get oxygen – usually done when a baby is a few months old.
The Fontan procedure connects another major vein (inferior vena cava) and the pulmonary artery. This lets oxygen-poor blood from the lower body get oxygen directly from the lungs – usually done between ages three and six.
“These guys are amazing! From our first stay in Leeds, Children’s Heart Surgery Fund were always around – a friendly face and chat. They helped us financially with grants whilst Sienna was in hospital and my partner was off work, as well as giving us a Family accommodation room to stay in. Resources in the parents’ room on the ward were also funded by CHSF.
“Now Sienna is home events like Wear Red Day at nursery and the annual Superhero Walk give her a sense of belonging and raise awareness of her heart condition.”
Wear red in Feb for the thousands of children in our region like Sienna!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
In May, heart mum Shannon will be taking on the Whitby Bungee Jump for CHSF – and she’s doing it for a reason very close to her heart.
Her son Tommy who had his first heart surgery at 8 weeks old.
“My son, Tommy, had a 6 hour open heart surgery at 8 weeks old due to sepsis on his heart. He was fitted with an external pacemaker maker. Unfortunately Tommy went into full heart block at 10 weeks old and had to be taken back to theatre for an internal pacemaker fitted that he’s now got for life and will need further surgeries throughout his life.
“Tommy is now a strong, happy 3 year old who loves life. The surgeon and his team at the LGI saved his life, and this is the reason why I would love to raise as much money as I can for Children’s Heart Surgery Fund who supported us through the worst time of our life and helped us in more ways than one. We are forever grateful to them.
“I’m very nervous about the jump but definitely excited and it makes me feel even more excited knowing I’m raising money for a special charity close to our hearts! I think people should sign up too to raise vital money for CHSF and the heart warriors and their families! ❤️ “
Shannon is daring the drop from Larpool Viaduct in May, but there are loads of Whitby Bungee dates available from February to August – so if you’ve been thinking about doing something brave for CHSF this could be your sign!
Sign up, take the leap, and help support local heart warriors and their families.
Your name: Sophie Dunn
Occupation: Director of Sales, The Motorist
Tell us about your heart hero:
“My son Leo is 4 years & 3 months and was diagnosed with Tetralogy of Fallot, with an additional VSD. Leo had his repair surgery just 11 days before his 1st Birthday. He will need further surgeries to fix a Tricuspid valve leak and to have his pulmanory valve replaced.
“The team at the Leeds Congenital Heart Unit are so supportive and helpful. They explained things further and looked after Leo so well. Children’s Heart Surgery Fund were brilliant too. They provided accommodation for us the duration of Leo’s stay in hospital (4 weeks due to some complications) which meant we could be onsite with him whenever needed.”
Why did you want to join the Board of Trustees at CHSF?
“After everything we’ve been through, I feel very passionate about CHSF and I felt a strong desire to give back and to help ensure other families get the same level of support we did.”
What professional skills and personal insights will you bring to the Board?
“As a heart parent, I know the difference CHSF makes to families and that personal experience means I’ll always bring empathy and keep families at the heart of any decision-making.
“At the same time I’m also a Director of Sales, and so I bring strong commercial skills such as building partnerships and driving growth – to developing new opportunities that could help CHSF increase it’s reach and fundraising.”