We know it’s vitally important to share your journeys with congenital heart disease. Your experiences are both reassuring and educational for other heart families, and provide vital awareness for others.
3-year old Zak’s condition was found by complete coincidence, but they found forever friends in CHSF and Katie Bear during his treatment, as mum Olivia explains:
“When Zak was 15 months old, he had an infected finger. We went backwards and forwards to the GP trialling multiple antibiotics with no luck until eventually he was reluctantly referred to York Hospital’s paediatric department.
“When we got there the usual observations were taken and the nurse turned to us and said ‘Oh I can hear, he has a heart murmur doesn’t he?’ which took us by surprise and we responded with ‘Not that we know of!’
“Fast forward a week and of course the murmur was still there, so we were referred for an echo and 4 months later in June 2023, we headed to York hospital for the appointment that would turn our world upside down.
Zak on Ward L51 with his Katie Bear
“The ultrasound tech said that Zak had a large Ventricular Septal Defect (VSD) and a leaking valve, however the specialist wasn’t going to be in the hospital for us to speak to until the end of July 2023.
“We nervously awaited this appointment and were told that Zak would need to have open heart surgery in the next 6-12 months to close the VSD. Fast forward to 3rd January 2024 and we were on our way to Leeds hospital ahead of the surgery the following morning.
“I remember the day Zak had his surgery like it was yesterday. I remember waiting around for what felt like a lifetime waiting to hear that he was out of surgery and rushing straight to Paediatric Intensive Care (PICU) as soon as we heard.
“Seeing my little boy with so many wires, tubes and drains coming out of him whilst completely unconscious is an image that will never leave my mind.
“At first there were some complications, the first night Zak spent in PICU he actually ended up with a collapsed lung which was so incredibly scary, luckily he made a really quick recovery from that. He moved on to high dependency and was showing great signs of improvement and just as we were getting ready to be discharged, Zak became unwell and ended up with an infection which extended our stay in Leeds.
“The 9 days we spent in hospital were made so much easier by the amazing staff at Leeds Children’s Hospital and CHSF.
“CHSF were brilliant. From beginning to end they supported us throughout Zak’s journey with everything from accommodation to just being a shoulder to cry on.
“What an amazing charity and we are eternally grateful for all the support that was provided before during and after. Katie Bear has become a huge name in our household, ever since Zak received her after his surgery they haven’t been apart, he sleeps with her every night ❤️.”
Wear red in Feb for the thousands of children in our region like Zak!
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!
Unable to do your own Wear Red event this month?
Donate online to our Wear Red Day 2025 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)
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Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
17-year old Alfie’s family found out he had congenital heart disease (CHD) when he was just 2 months old.
Following multiple procedures, Alfie is now enjoying life both as a teenager and keen LUFC supporter, as mum Kirsty tells us:
“Alfie was only 7 weeks old when we found out he had congenital heart disease. He was diagnosed with aortic stenosis and mitral valve regeneration and at 8 weeks he had a ballooning done of his aortic valve to help widen it.
“Alfie got sick again at 10 months old and was admitted to LGI once more. Again it was decided then that the surgeons would replace his mitral valve for a mechanical one, and he was put on Warfarin to help thin his blood so it could pass through the valve and round the heart.
“His next operation happened at age 5 as the mechanical valve had outgrown him. Then when he was 14 he went for open heart surgery again, but this time he had his aortic and mitral valves replaced and an aortic arch repair.
Alfie is now 17
“After this surgery, Alfie became ill. He had got endocarditis and this required a 6 week stay for IV antibiotics. This was hard to take in at first, but eventually it did and this again was explained well and we were talked through every test and treatment option.
“When Alfie was first admitted we were given a lovely family room by CHSF which was helpful as we weren’t far from him. The most recent time he was admitted, we were also offered a room, but we wanted another family to have this as we do not live far. We were also given a welcome pack with essentials in.
“I also had travel expenses paid weekly to help with journeys to and from the hospital as I needed a break once a week, plus I had to catch up on washing. They also provided Alfie with a takeaway voucher so he could have movie night once a week. He is autistic and found it hard to adapt and his stay very hard.
“CHSF helped us with an INR home testing machine to save us having to visit hospital for blood tests (which would have been up to 3 times a week) which Alfie hated. This had a big impact on home life and made it much more normal.
“CHSF also donated a Leeds United ticket to Alfie, where he had a meal and watched the match – he absolutely loves his team. This was so thoughtful and Alfie enjoyed every moment. Alfie and his dad raised £500 back in lockdown for CHSF as we wanted to give something back. As a family we can’t thank the charity enough!
Wear red in Feb for the thousands of children in our region like Alfie!
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!
Unable to do your own Wear Red event this month?
Donate online to our Wear Red Day 2025 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)
[Texts cost the chosen donation amount plus one standard network rate message]
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
Finley Kenneth Peirson was born in July 2022 and was rushed straight to Scarborough’s Special Care Baby Unit with a suspected infection. Over the weeks that followed, Finley deteriorated and was put into an incubator.
One of the doctors detected a heart murmur and this was confirmed by one of the cardiologists. Finley and his parents were immediately blue-lighted to the Leeds Congenital Heart Unit (LCHU).
Finley was diagnosed with Supracardiac total anomalous pulmonary venous drainage (TAPVD) and required open heart surgery as soon as possible – his parents were told it would take place within days. Children’s Heart Surgery Fund (CHSF) supported Finley’s family throughout the 11 days that Finley was at the LCHU, even providing Finley’s mummy and daddy with accommodation within the hospital.
Mum Tamra said: “It was a godsend as I’d only had surgery myself, just days before and I was in a wheelchair and couldn’t walk, let alone drive and travel to and from Malton. 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 CHSF wards looked after Finley for the 11 days he was in Leeds.”
“Wear Red Day is a very special day for us as a family, as it is to many other heart families. It gives us a special day to embrace what we’ve been through and to remind people they are not alone. Heart conditions are more common than most realise with 13 babies being diagnosed with a CHD every day – which means we should understand and learn about them. This day is about showing our heart warriors they should not hide their scars – they are part of who they are and they should celebrate that.
“Children’s Heart Surgery Fund gives us families a centre hub to connect with one another and support one another. Without CHSF raising funds and supporting the children’s cardiology department, we wouldn’t have vital equipment for our poorly children to help them survive.
“So please support them by raising as much money as possible so future poorly children can also thrive just like our little man Finley does now, today.”
Wear red in Feb for the thousands of children in our region like Finley!
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!
Unable to do your own Wear Red event this month?
Donate online to our Wear Red Day 2025 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)
[Texts cost the chosen donation amount plus one standard network rate message]
Amy’s daughter received open heart surgery at just 11 weeks old. Amy’s little one is now three years old and Amy tells us all about her daughter’s CHD journey to date.
Amy is also pregnant and knows her baby is already a heart warrior too.
Amy, known online as Asphodel Moon, is a heart mum with a love for online gaming. Read all about her gaming fundraiser for CHSF here.
Amy said:
“When my daughter was 9 weeks old, she had her 8-12 week check up with her local GP. He heard a heart murmur and sent us straight to the children’s ward of Calderdale hospital.
“Here she received an echocardiogram which confirmed to me that she had a hole in her heart, also known as a Ventricular septal defect (VSD). It was explained to me that where the hole was in her hearts septum, that too much blood was being pumped to her lungs and was making them gather fluid, this in turn was making it difficult for her to breathe.
“She was put on a nasogastric tube which went in through her nostril and straight down into her stomach, this would mean less energy was used when feeding as food would just go directly down her tube; she was now fed a special formula that was measured in specific amounts that would help her gain weight.
“She was in the children’s ward for five days, which included a day trip to Leeds General Infirmary where they did another echocardiogram and confirmed the VSD, telling me it would be a minimum of two surgeries. We were put on a waiting list.
“In December 2021, when my daughter was only 11 weeks old, I got the phone call that said they had a bed for her and they could do the operation in two days time.
“This first operation would be an open heart surgery that would involve putting a band onto the Pulmonary Artery which would slow blood flow to the lungs, further helping with growth and thriving.
“In order to fix the hole further down the line, she needed to be a lot bigger as the hole was in a difficult place to reach so the longer they could leave it before the second surgery, the better.
“I was told the surgery could take up to eight hours and the only reasons they would contact during the day would be once the operation was complete or if they needed my parental consent should something happen.
Amy’s daughter had open heart surgery at 11 weeks old at the Leeds Congenital Heart Unit.
“Watching my daughter go under the anaesthetic was one of the worst things I’ve had to witness and leaving her there was one of the hardest things I’ve ever done. She was only in theatre for three and a half hours before being transferred to PICU. Seeing your entire world lying there covered in tubes and wires, seeing the scar on their chest is utterly heartbreaking but knowing she made I through the operation and was in that moment okay, was a relief.
“I want to give a mention to her surgeon, Giuseppe Pelella, because without him, we wouldn’t be at the point we are today. She spent one night in PICU before being transferred to the High Dependency Unit. Here she had tubes and wires removed, came off morphine and went onto Calpol and continued to improve.
“After just one night in HDU, she was moved to the children’s ward to continue healing and being monitored; here she started back on her tube feeding. After three days in the main children’s ward, we were discharged and sent home with lots of medication and instructions to follow for wound care and healing.
“Following her first operation, my daughter was seen regularly by her cardiologist, Dr Grazia Delle Donne who monitored her growth, her heart and how the band was working.
“Earlier this year, I found out I was pregnant. I’ve had extra scans with cardiology and we’ve discovered this baby also has a congenital heart defect.”
“In September 2022 we were told that the VSD had started to shrink, which was amazing news because at the very beginning, we were told it was too big to do that naturally. By August 2023, it had shrunk further and Dr Delle Donne said she would make a good candidate for the cardiac catheter procedure.
“This meant a much higher chance of no further open heart surgery to fix the VSD as the catheter goes in through the groin, and they could patch the hole and balloon the PA band in the same procedure.
Amy’s daughter is now three years old.
“In January of 2024, my daughter underwent her cardiac catheter procedure. This second time seeing her go under the anaesthetic was worse as she was 2 years old – so reacted a lot differently to the first time as a baby.
“She also had a Transoesophageal echocardiogram which is an echocardiogram but down the throat as that gets a much clearer picture of the heart as the ultrasound doesn’t have to be navigated around ribs and muscle etc.
“She was in surgery for about an hour and a half, maybe two hours. When I returned to the children’s ward, I was told that when they had a look at her heart through the transoesophageal echocardiogram, they could not find the VSD, so all they had to do was balloon the PA band. We were in the children’s ward for one night and discharged the next morning.
“My daughter is now 3 years old, full of energy and incredibly sassy. She’s extremely independent and such a chatterbox. She’s a massive fan of Halloween and Nightmare Before Christmas (wonder where she gets that from ) but also loves pink, Barbie and unicorns. Her latest obsession is pretending to do my make-up.
“Earlier this year, I found out I was pregnant and due to my first baby’s heart condition, this pregnancy was considered high risk. I’ve had extra scans with cardiology and I am under foetal medicine as we’ve discovered this baby also has a congenital heart defect.
“Currently the diagnosis is a Right aortic arch (one of the arteries arches around the trachea instead of bypassing it but we are waiting to find out if it is actually a Double aortic arch (two arteries arching around the trachea causing breathing issues). If it confirmed to be the latter, I will have a second heart warrior baby that requires surgery from the cardiology team.”
Amy is supporting CHSF this November with a Game4Hearts fundraiser!
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written by mum Tilly-May
“Back in February of this year (2024) we went for our 20-week anomaly scan at Bassetlaw. Unfortunately, a clear view of Beau’s heart could not be seen so we were sent to Leeds General Infirmary so the cardiology team there (who are one of the UK’s top specialists) could take a closer look at her heart.
“During this scan they found a congenital heart defect Atrioventricular septal defect, commonly known as AVSD (two holes between the right and left pumping chambers). We were given so much information around this condition and told that surgery is something Beau would need at around 3 to 6 months of age.
“We were regularly monitored throughout our pregnancy, and I had a planned C-section in Jessops (Jessop Wing, Sheffield Teaching Hospital) at 38 weeks.
“Once Beau was born, she had an echo the next day where a second heart condition was picked up. They confirmed Beau had a Coarctation of the aorta and a mild, leaky right valve regurgitation. This wasn’t something they would have been able to detect until after birth.
“We were transferred after three days in Sheffield NICU to Leeds so the specialists there could take a closer look and work out a plan for us moving forward. We arrived in Leeds on Saturday evening absolutely scared to death not knowing what to expect, emotions sky high as you can imagine. I was three days post op myself, so things were totally up in the air emotionally.
“We had another echo by the specialist upon arrival, and the whole team at Leeds had a meeting on the following Tuesday. During this meeting the specialists decided Beau would need open heart surgery immediately to repair the co-arc. Without this Beau would have been very poorly and we wouldn’t have gotten as long as we did with her. They also planned to take a closer look at Beau’s heart as her left chambers were still not growing as they should.
Beau’s heart condition was initially diagnosed after the 20-week scan at Bassetlaw Hospital. Transferred to Leeds straight after birth, Beau had heart surgery at just 9 days old.
“Her surgery was performed on the Friday when she was just 9 days old. The operation took a total of nine and a half hours which to us felt like a lifetime. Her surgical team however were fantastic and did the best job they could, and we will never be able to thank them enough.
“Beau went straight to PICU where she had a nurse staring at her 24/7 for 5 days straight whilst she was in the crucial part of her recovery. She smashed it, our fighter for sure! We returned to the High Dependency Unit (HDU) on Ward L51, where Beau was prior to surgery. Her recovery continued and she came on in leaps and bounds.
“However, on day nine of recovery Beau suffered episodes of tachycardia and bradycardia which meant we had to take a detour back to PICU where she was intubated for a second time. This step back allowed Beau’s body to rest and recover. A few days there and she was ready to go back to HDU (third times a charm!)
“Everyone doted on her as she was one of the longest patients on the ward at that time. They really did become our second family whilst we were there.”
“After a few days of being back on HDU, we went out on to the ward and had our own private room. This also meant we could finally stay with her over night for the first time since the day she was born.
“During her first two weeks of life, Beau’s weight had drastically dropped due to feeds being paused before and after surgery, and whilst being intubated in PICU. We finally got her weight above birth weight which was HUGE for Beau. It took Alix the dietitian A LOT of work, but we did.
Beau was in hospital at Leeds for 6 weeks after birth and surgery, during that time they were looked after by CHSF who provided support, essentials and accommodation.
“At exactly six weeks old, we were able to go home. I won’t go into the emotional and mental trauma me and her dad suffered during those six weeks, but we were so well taken care of by all the staff on the ward and at CHSF that we never felt alone, not even for a second.
“I became a parental expert in Beau’s condition, medicines and routine and was an active participant during ward round every single day. The nurses would say “You’re practically a nurse now, Tilly!” I found it very surprising that not all parents were as hands on and involved as we were, but every parent deals with this differently and until you’re in our shoes you can’t judge.
“I always tried to look at our situation through the glass half full method and I believe that’s one thing that kept me going. Hope. Not only that, Beau was the happiest little girl you could ever meet. You honestly wouldn’t have known what she was going through to look at her.
“All the nurses, specialists and consultants doted on her as she was one of the longest patients on the ward at that time. They really did become our second family whilst we were there.
“We loved being home as a family FINALLY, but it wasn’t long before I had the dreaded nagging ‘mumstinct’ that something wasn’t right. I had spent so long looking at monitors, reading numbers and getting to know her norm that I just knew something was off, so on the Sunday, we took her to our local children’s ward.
“I noticed she had ‘subcostal registration’ which sent alarm bells ringing as this was something that happened back in Leeds (when she had to go back to PICU the second time). However our local hospital were happy that she had no other symptoms and all her observations were in her normal range, so they sent us home.
“The nagging didn’t go so I rang our community nurse first thing Monday. She came out on Tuesday at 8am and agreed her respirate was higher than they’d like, so she sent us to our local children’s ward to be checked out again. If only I knew that was the start of the end of my whole world.
“During the first couple of hours in resus where the team tried their upmost to cannulate and intubate Beau, she unfortunately suffered three cardiac arrests.
“The words “I’m so sorry but the team are working on her right now.” will echo in my nightmares for the rest of my life.
“We ran in – again I don’t need to tell you how much of a mess me and Sam were in – but true to form our little fighter pulled through. They weren’t confident that Beau would make it to Leeds so I did the only thing I could, and I prayed to my angels to get help. Get her stable enough to make that journey – and she did!
“Her high-risk heart consultant and the lead cardiac specialist on PICU that night met with me and Sam as soon as we arrived, and they told us they weren’t confident Beau would make it through the night. The team were doing all they could for her. A lot of that night will haunt me, and a lot will be lost in my memory.
“Beau then suffered a fourth cardiac arrest, and we were asked the question “How much more do we put Beau through before we make the decision to stop?” We obviously said do all you can until there’s nothing more to be done.
“Beau’s brain had started to show signs of shutting down and they told us she would continue to slip into cardiac arrest. Our world in that moment stopped. They reached a point where there was nothing more that could be done. They turned all machines off so we could just hold our baby in her final moments.
“We laid with her. Talked to her. Sang to her and even cried to her. She went to sleep for her final time on Wednesday 31st July at 1:10am – at exactly 7 weeks old.
“She suffered so much in her short life and honestly none of this is even a true in-depth account of exactly what we went through. I could write a book, and it still wouldn’t be a patch on what we went through. I will never forget the moment they told us there was nothing more they could do for her, I physically stopped breathing in that moment, and I will never recover from that.
“Our girl was so loved and looked after by all the team at LGI, and she was given the best of the best care any parent could ever wish for their child to receive.”
Now in its 22nd year, Baby Loss Awareness Week (9-15 October) is run by the charity Sands and works to break the silence around pregnancy and baby loss, as well as it being an opportunity to share stories and remember the little ones gone too soon.
Sadly many families in the heart community have experienced the loss of a child or a pregnancy.
We are so grateful to parents, Tilly-May and Sam, for sharing Beau’s story this week.
Can you make a life-saving donation to help fund our vital work for local heart warriors?
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Jessica was born with a hole in her heart and had open heart surgery when she was 8 years old.
During her time in hospital, gaming provided a huge relief, joy and distraction from her treatment and continues to play a big part in her life.
In 2021, Jessica decided to do a 24-hour gaming stream for CHSF and here’s how and why!
“The reason why I did this challenge was – as a child going in for an operation, it can be scary and frightening. However, the hospital put you at ease and try to make it not so scary.
“I remember them bringing round gaming consoles which I LOVED! I also have separation anxiety of being away from my mum and dad. These were the reasons why a gaming stream fitted so much for this fundraising challenge!
“I wanted to give back as I truly cannot thank the charity, hospital and all the doctors and nurses enough.
“For effectively giving me a life and being able to do things I wouldn’t have been able to if I didn’t have the surgery when I was 8 – or I possibly would not be here!
“I set myself the challenge of doing a 24-hour gaming stream. I ended up doing three 8-hour streams as I noticed that after 8 hours it ended, haha!
“There were three of us in my team! Myself, my brother James and his friend Lee – we all decided to do the 24-hour gaming stream for a charity that meant the most to us.
Jessica has open heart surgery when she was 8. “This is a picture of me with my friend that I met in hospital and still have contact with now! It’s nice to have met someone that understood what you went through with something similar!”
“We ended up playing Call of Duty for the full 24 hours, however we played different game modes. On one of those we managed to get another 27 friends involved in a big warzone of ‘last team standing wins’ which was great fun!
“I decided to do the fundraising through JustGiving as to be honest that seemed to be the easier platform to do it on. I always look at easier ways for the same outcome and JustGiving had a very user-friendly website.
“JustGiving asks you the questions, which charity you are doing it for etc and links into your Facebook so it basically sets it up for you!
“I believe you can do it with different accounts so if Facebook isn’t for everyone then you could sign up to JustGiving itself or through Twitch. If you are doing a gaming stream this might be ideal!
“JustGiving deal with everything from start to finish and then give the charity the money so no extra bits needed apart from sharing the link with people to donate.
“My tip would be for doing any kind of gaming stream is to keep communicating with people to stay awake and stay entertained! Making sure your support is great too really helps! I had done a Facebook Live and people kept popping on at different stages to keep me motivated and keeping me going!
“Raising the money that I did meant so much to me on a personal level as I know how far that money will go. I just want the children to feel as comfortable as possible whilst they are in hospital and make sure they have the machines/things they need most too. So, any help and anything that I can give back, I do!”
Feeling inspired to join Game4Hearts?
Simply follow the link below to sign up and find out all the ways you can fundraise for CHSF through gaming.
written by heart dad Jerome
“Adalee was born 9 weeks early. All was going well, and she was soon transferred from York, where she was born, nearer to home in Scunthorpe. This is when they picked up on a slight heart murmur that would be monitored as she went on.
“She was in Scunthorpe for around a week and in that time, she had progressed so far. She was out of her incubator, into a cot and off most of her monitors. We were all ready to get her back home to Grimsby.
“It was on route to Grimsby when doctors received a result from a scan that had be done the evening before. It showed multiple issues with Adalee’s heart, but she was completely non-symptomatic. It showed holes in her heart, narrowing of her aorta and deformed valves.
“The doctors sat us down and said most likely we would have to prepare for the worst, however there were options for surgery. She was far too small to consider anything at the moment. She ended up back into her incubator and on all monitors again, but she wasn’t fazed. Adalee was less than 2kg and we were told that her minimum weight required for surgery would be 3kg.
Adalee was born 9 week early with a condition called Shone’s Complex.
“She kept proving everyone wrong and she kept growing and growing. She came off being tube fed and moved on to bottle feeds which they weren’t sure would happen due to her cleft lip, but she kept going and mastered it.
“We had a few rocky moments whilst in Grimsby but I’m sure she just liked to keep us on our toes!
“All the staff there were fantastic and in the 6 weeks we were there they just became family. As her weight was just about where it needed to be, Adalee dipped. She wasn’t gaining as she had been and generally was not being herself. After a few days of this, tests discovered that she also had a bleed on the brain which hadn’t been there previously.
“She is always referred to as a miracle baby and she’s the happiest miracle I’ve ever seen.”
“Because of changes in herself and the latest discovery, she was close enough for the Leeds team to have her shipped over for their assessments. She arrived in Leeds in the evening, and everyone was very welcoming. By the next day they had decided her surgery was going to be first thing the following day. This surgery was to remove the narrowing of her aorta to improve the blood flow to the rest of her body.
“The following day we got her all ready to go down to theatre. We got her in the gown, and we walked down to theatre with her. Leaving her there was hard and the next few hours felt so long as you can only think how she is getting on.
Adalee finally came home at 65 days old and is going from strength to strength.
“Around half past one we got the call to say that everything had gone to plan. She was making her way on to the Paediatric Intensive Care ward (PICU) and we could meet her there – this was the biggest relief!
“We went up and she was all ventilated. There were probes and cannulas everywhere, but she was okay that was the main thing.
“As time went on, she was having a line or a monitor removed, and after around three days she was sent down to the children’s heart ward (L51) where she recovered further, ready for discharge a few days later.
“At 65 days old we finally got to take Adalee home for the first time. She has continued to thrive, and she now has a great little personality, laugh and smile, no matter what’s thrown her way.
“She still has the brain bleed that’s under investigation she still has her shones complex which is the cause of all her heart issues. We recently found out that her surgery will most likely need redoing in the future, along with other possible heart surgeries to keep her going strong.
“All in all, she is a whirlwind in every way (constantly removing her feeding tube to add to the list!) but we wouldn’t change her.”
My daughter Adalee was my inspiration for doing a half marathon. She is always referred to by medical staff and general people as a miracle baby and she’s the happiest miracle I’ve ever seen. That’s why I put myself through this 13 mile trial, to help with the trials that she faces on a day to day basis.
“I’m such a proud dad and Adalee’s is the face I wanna see at the finish line, smiling and laughing at me for only giving myself two weeks to prep!”
We shouting a huge thank you to heart dad JEROME for sharing Adalee’s story and running the Humber Coastal Half Marathon to raise vital funds for CHSF! You are a true inspiration and have raised an awesome £610!
Can you make a life-saving donation to help fund our vital work for local heart warriors?
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Lochie Blue is 2 years old and lives in Silsden near Keighley.
He was diagnosed at 10 days old with Coarctation of the aorta, Ventricular septal defect (VSD) and Atrial septal defect (ASD).
Lochie and his family will be at this year’s Superhero Walk and we spoke to his mum Kate about Lochie’s condition and how they have been supported by CHSF during their heart journey…
How did you find out about Lochie’s diagnosis?
“Lochie was born at Airedale Hospital after an uncomplicated pregnancy with no concerns for his heart during scans. He was born at 36+6 due to me getting HELLP syndrome.
“Lochie was a tiny 5lb 3oz and his feeding was poor, so he was transferred to the Special Care Baby Unit (SCBU) for observation.
HELLP (Hemolysis, Elevated Liver enzymes and Low Platelets) syndrome is a rare, life-threatening complication of pregnancy that affects the blood and liver. It is usually considered to be a variant of preeclampsia.
“After a worrying 10 days where he continued to decline with no explanation, he was transferred to LGI for further investigations. An hour after Lochie arrived at LGI, an echo confirmed his diagnosis of coarctation of the aorta, VSD and ASD. They commenced medication to stabilise him, and we were informed open heart surgery was needed as soon as possible to save his life.”
What was your experience of the Leeds Congenital Heart Unit on both occasions? And how did you deal with the emotional challenges of being a heart family during treatment?
“My first contact with the congenital heart team was whilst Lochie was stabilised on PICU. A lovely lady came to see us at Lochie’s bedside to talk through the process of what would happen and arranged for us to see where Lochie would be taken after surgery.
“Becoming a heart family so unexpectedly was challenging.”
“This was comforting as we were in an unfamiliar hospital, away from Lochie’s older sisters, Lilly and Quinn, and we were absolutely petrified of what the future held. Our world had collapsed so we relied heavily on our closest family and friends to keep us somewhat sane and make sure our girls were comforted and supported at home.
“The staff on Ward L51 were warm, welcoming and happy to answer any questions we had. The amazing nurses always went above and beyond. From Nurse Lucy doing some night feeds when I was expressing or trying to catch up on some well needed sleep, to Nurse Lydia who supported me with breastfeeding and being there for a chat when I needed a distraction from the rollercoaster of emotions we were on.”
“Six months later, Lochie came in for his planned, second open heart surgery. As daunting as this was, it felt very controlled and much less stressful than previously. We were supported by the psychology team at Leeds who met with us at our pre-op with Lochie’s surgeon, Guiseppe Pelella to discuss his next operation.
“Becoming a heart family so unexpectedly was challenging. We felt unprepared as everything was massively out of our control. Our vision of taking our third and final addition home to meet his sisters was ripped away. Instead, we worried we would be telling his sisters the worst.
“18 days after Lochie’s birth we reunited as a family at LGI HDU. The girls met Lochie and had their first cuddle with him before he went off to undergo nine hours of surgery the next day.”
Could you tell us a bit more about what the team on the ward and CHSF did to help during Lochie’s treatment?
“The Play Team were fantastic providing toys for the cot, an iPad for distraction for Lochie when he needed to rest, and they played with him so we could grab some food. As it was Halloween there were decorations and goodies, so the little ones didn’t miss out on the celebrations.
“Lochie was presented with his second Katie Bear, medal and certificate which was a great comfort to Lochie whilst in hospital. It also reminds us daily of how strong our little heart warrior is.
“The practical things were all taken care of such as a car parking pass at the hospital and the CHSF-funded accommodation, so we had a place to stay close by.”
How is Lochie doing now?
“Now 2, Lochie is full of joy, always happy and smiley, even more so whilst plane-spotting! He loves nothing more than making his big sisters laugh and letting them run around after him.
“Lochie is so laid back. He’s never phased by his check-ups and enjoys lapping up all the attention. He’s now graduated to annual echos and has started pre-school. He has a few more hurdles to get over in the future with minor surgeries but right now he is loving life as a plane-obsessed, chocolate monster.”Why do you think people should take part in the Superhero Walk for CHSF?
“The Superhero Walk is a fantastic, fun day for all the family with the added bonus of being able to give back and help raise funds to support the next family on the same journey we had.”
Join Lochie at Superhero Walk!
“Now he’s a big strong lad, Lochie will be donning his superhero attire and bossing the Superhero Walk this year. This is to raise vital funds to keep this service going and to support the families going through the same journey we did.” — Kate, Lochie’s mum
Join Lochie and his family at Superhero Walk 2024
Jessica Thomas, 13, excels at dancing after overcoming heart defect
A teenager who had an eight-hour open heart operation at just six months old has been described as ‘inspirational’ after excelling as a dancer.
Jessica doesn’t let her heart condition hold her back. She does 13 dance classes a week!
Jessica Thomas, from Norton, was born with an atrioventricular septal defect (AVSD), which is a hole in the top and bottom chambers of her heart.
The 13-year-old has since gone on to enjoy a wide range of dance from ballet and tap and to musical theatre and street – attending over a dozen classes a week.
She now has twice yearly scans at an outreach clinic of the Leeds Congenital Heart Unit in York, but is doing well.
Jessica’s mum, Katrina, said:
“We found out about Jessica’s heart defect at the 12-week scan.
“Initially they thought she might have Down Syndrome but this turned out not to be the case and at around 20 weeks we found out Jessica had a heart defect.
“It was a worrying pregnancy but other than being small she did remarkably well.
“We remained positive and the eight-hour surgery went ahead. That was a long day.”
Katrina said that due to Jessica’s heart defect she enrolled her in the Norton-based dance school, Dance Expression, aged the age of three.
“This was purely as I thought it would keep her fit, but she had a big love for it and soon one class turned into two, two into three and now she is there doing 13 classes a week.
“Jessica says her heart scar makes her unique, it shows strength and a determination for life.”
“From ballet, tap and contemporary to musical theatre and street she loves them all. Jessica says her heart scar makes her unique, it shows strength and a determination for life.”
The family have been helped by the Children’s Heart Surgery Fund (CHSF) which supports the Leeds Congenital Heart Unit (LCHU) as a world-class centre of excellence – by providing the funding and resources needed to care for a patient’s heart, mind, family and future. The LCHU itself is supported by 19 local hospitals with outreach clinics across the region.
Jessica says that CHSF has helped her to “live a full and exciting life” thanks to funding the world-class care and life-saving work of the Leeds Congenital Heart Unit.
Andy McNally, CHSF’s Head of Marketing said:
“We have loved hearing about Jessica’s active lifestyle, and her amazing weekly dance schedule.
“Stories like this are really inspiring for young heart patients and their families to hear, and testament to the skill and dedication of the team at the Leeds Congenital Heart Unit.”
Jessica herself said:
“CHSF have helped me live a full and exciting life. My surgery has meant I can now do 13 dance classes a week. I go for two yearly scans to make sure all is well.”
CHSF are wholly funded by public donations, and because of public donations the LCHU are able to give optimal treatment to the 17,000+ babies, children, teenagers and adults living with congenital heart disease in our region each year.
Around 1 in 125 babies are born with a congenital heart defect, and CHSF provide life-saving medical equipment for the LCHU, parent accommodation for families, and essential ward resources.
We also provide emotional, practical and financial support for heart families and fund staff training, scientific research and new clinical roles.
Can you make a life-saving donation to help fund our vital work for local heart warriors?
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Simon from Scunthorpe was born in the the early 80’s with congenital heart disease. He was diagnosed with a heart murmur and a hole in his heart when he was six.
But it wasn’t until a few years later, after developing an infection, that Simon, his family and doctors truly knew the extent of his heart defects…
Simon, now in his forties wanted to share his story to give hope to young people living with heart disease. He said:
“At six, I was told I had a heart murmur. It was sort of explained to me, but being six, I didn’t really know what it meant. The part that stuck was, “You’ve got a hole in your heart!”
“At age eleven, in the summer of 1993, I had a bike accident while riding around the yard. I hit the house wall because my brother had taken the front brake off (I don’t blame him) and I lost a few teeth.
“Sometime soon after the accident, I found myself becoming very cold and shivering uncontrollably, yet I was red-hot to the touch and sweating. These episodes would last maybe 15-30 minutes, and afterward, I was back to my normal high-energy self. Over the next two days, the coldness (or, as Mum started to call it, a ‘turn’) became more frequent. This was on a weekend in June.
“I still had to go to school on Monday despite my objections. I remember one ‘turn’ starting as we were having lunch at school. I was put in the school entrance hall on the chairs with blankets.
“This was the early nineties in a small village school with around 20-25 kids per class. The school had no sickbay or nurse. I believe the school lollipop lady took me home as she lived next door to me.
“I kept having these ‘turns’ more and more frequently. The doctor was called out to see me, and they said it was tonsillitis.
“Then the following day, another doctor came out to see me. He saw me having ‘a turn’ and wanted to organise for me to go to the hospital.
After life-saving treatment at Killingbeck Hospital (where the specialist heart centre for the region used to be) Simon and his mum started fundraising for Children’s Heart Surgery Fund.
“I was taken to Scunthorpe Hospital, and I stayed on the Disney ward. The doctor was doing what doctors do—tests and such. I remember having a turn and them trying to take the blankets off me to do some tests. I was holding onto the blankets because they kept me warm as I was shivering, but with a super high temperature. I remember being told I had glandular fever.
“The next day or the day after, I think the treatments (a drip) were not working for me as I kept having turns. I remember they wanted to change my bedding while I was having a turn. I remember being curled up crying but making no sounds, and the housekeeping people insisted I get out of bed.
“I later found out that Mum was saying to the doctors, “Is it his heart? Contact Leeds.” and the doctors dismissed her.
“I remember the cleaner on the ward talking to my Mum, and saying, “Just ring Leeds yourself. There’s a payphone.” She did, and a few hours later, I was in an ambulance headed to Leeds. I was kind of weak at this point, with no energy to eat or even go to the toilet. I had wet myself a few times because of this. I also remember pulling the drip out of my hand at some point and getting told off.
Simon shared lots of items from his memory box with us including this Christmas Card that was sent to him by the charity from ‘Katy Killingbeck’. She is now known as ‘Katie Bear’.
“As we were getting to Killingbeck Hospital in Leeds, I started having a ‘turn’. I remember sleeping and being taken out of the ambulance. I woke up being wheeled into this strange place. It had roofed footpaths. I kept asking where we were. We got to the ward, and I had all these people around me.
“I really don’t remember the next week or so, but I do remember my mum saying, “It’s endocarditis” (little bugs eating my heart).
“I would need an operation to replace my aortic valve and repair my mitral valve. A few things I remember while in Leeds about my treatment…
- Having a drip fed into my neck to drip into my heart and thinking it was cool — I looked like Predator from the films.
- A feeding tube in my nose. I had a coughing fit, causing it to come out of my mouth, and I pulled it out – to the horror of the nurse at the desk!
- A time a nurse was having issues with one of my drips, and I set it up for her.
- Going for echo’s and asking if there was an alien in there.
- I remember Dr. Briggs coming to see me and asking if Mum was around. She was out shopping, and he said to get him when she was back. She came back, and he basically said, “We are going to operate on you,” and I raised my fist, saying, “Yes!” because it meant I would be out of there.
- They did the operation on Bank Holiday Monday in August. All was well, though I had a few issues afterward with a fast heart rate.
- I was very ill the few days before the operation and later found out from my brother Paul that it was not very likely that I would pull through it.
“While in intensive care waking up, I remember seeing a tap, and all I wanted was a drink. Apparently, when I woke, Mum said I quoted ‘Johnny 5’ from the film ‘Short Circuit’, saying, ‘Simon is alive.’ I don’t remember that, but it sounds like something I would do.
“I was discharged from the hospital on September 28th, the day after my birthday. In total, I was in Leeds Killingbeck for three months and a day.
“In 2021, at age forty, I went for a check-up at Leeds LGI and was told I needed the same operation doing again. The valve has basically worn out, and they were very surprised I was walking, and running up and down stairs to the fancy X-ray machine.
“I think they say that stuff, so you don’t worry. I was s***ting myself, in all honesty. I knew the day would come but didn’t expect it.
“I’m sharing my story because I want kids to know that you can have a ‘normal life’ and having heart surgery doesn’t stop you doing things. Keep active, eat well, know your limits.”