We are delighted to congratulate Carin van Doorn on receiving her OBE from His Majesty The King at Windsor Castle earlier this month.
The award recognises Carin’s outstanding services to Children’s Heart Surgery and Charity during a remarkable career dedicated to improving and saving the lives of children born with heart conditions.
Speaking about the occasion, Carin said:
“The investiture took place at Windsor Castle on 7th July. The OBE was given to me by King Charles himself, and it was a very special occasion. I feel very humbled to be given the OBE.”
After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit, Carin retired at the end of 2025 – leaving behind an incredible legacy.
Last year, through our Because of Carin campaign, we celebrated the profound difference Carin has made to countless children and families. Her skill, compassion and leadership have helped shape the care available to heart patients across the region and beyond, and her influence will be felt for generations to come.
Everyone at Children’s Heart Surgery Fund sends our warmest congratulations to Carin on this well-deserved honour. Thank you, Carin, for everything you have done for children with heart conditions and their families!
On International Women’s Day we are very proud to see Carin van Doorn (former Consultant Cardiothoracic Surgeon at the Leeds Congenital Heart Unit) celebrated as one of the inspirational women surgeons in a new portrait exhibition at Hunterian Museum, London at The Royal College of Surgeons of England.
The exhibition ‘Insight: Portraits of Women in Surgery’ shines a spotlight on women in surgery working across the UK today.
Recently retired, Carin worked in Leeds from 2013, where she led the Congenital Cardiac Surgery Team and operated on thousands of children, young people and adults affected by congenital heart disease. Her work had a profound impact on so many patients and families across the region and at CHSF we are so very proud of her!
Carin said:
“As a surgeon, I have worked with many outstanding surgical colleagues, both male and female. It cannot be denied though, that female surgeons are still very under-represented and that surgery is not always seen as a career that can be achieved by women. I hope this exhibition contributes to changing those perceptions.”

Carin’s portrait was taken by LTHT Clinical Photographer Charlotte Marsh, who attended the launch earlier in the year. Charlotte said:
“Carin has had an extraordinary career and it was a privilege to capture her portrait. Women have historically been underrepresented in both surgery and photography, so exhibitions like this feel important. Seeing so many powerful portraits of inspirational women together was incredibly inspiring. It was also fantastic that the museum chose to involve medical photographers in the project, recognising the insight we bring from understanding the clinical environment and the culture of healthcare.”
You can read more about the exhibition here.
Happy International Women’s Day to all our inspirational female colleagues and patients!
Photographs courtesy of the Hunterian Museum at the Royal College of Surgeons of England.

After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit (LCHU), Carin van Doorn OBE retired at the end of 2025.
After dedicating her life to children’s cardiac care, we want to ensure that Carin’s legacy at Leeds lives on after she retires. You can help us do just that by donating to the ‘Because of Carin’ appeal.
To find out more about the ‘Because of Carin’ fundraising appeal, click here.
CHSF needs your votes in the Smiley Charity Film Awards 2026!
Children’s Heart Surgery Fund is up for an award in the Smiley Charity Film Awards 2026, the world’s leading campaign celebrating films for good, and is calling on the public to vote and help their film win.
The video shortlisted is our short film about the outstanding career of super heart surgeon Ms Carin Van Doorn OBE. The piece follows Carin’s career at Leeds, and showcases not only her personal impact but the importance of our world-class Leeds Congenital Heart Unit as a whole and why it desperately needs vital funds and support.
“We’re so proud to be part of the Smiley Charity Film Awards. Our film is more than just Carin’s story – it’s a celebration of our amazing heart unit, and our incredible patients and families. We’d love for our community to show their support by watching, voting, and sharing.” – Olivia Lewis, Digital Marketing Manager
Now in its ninth year, the Smiley Charity Film Awards is the world’s largest platform for films with purpose, celebrating creativity, compassion, and positive change. Previous hosts have included household names such as Lisa Snowdon and comedian and TV host Tom Allen, alongside attendees industry experts from leading creative and humanitarian organisations.
Voting closes 30th January
A huge thanks to Carin herself, our talented videographer Matt Crumpton, CHSF Marketing team and Leeds Children’s Hospital as well as everyone featured in the film who made it all possible.
About the Smiley Charity Film Awards
The Smiley Charity Film Awards celebrate the best in cause-led storytelling, shining a spotlight on charities, social enterprises, and community organisations using film to make a difference.
Since launching, the Awards have helped thousands of organisations reach millions of new viewers, attract fresh supporters, and drive real-world impact. “The Smiley Charity Film Awards remind us just how powerful storytelling can be. These films don’t just raise awareness – they move us, connect us, and remind us of the good that exists in the world. Each vote is a moment of recognition for those turning compassion into action.” — Lorna Milliken, Managing Director, Smiley Movement
Find out more at smileycharityfilmawards.com
As part of our Because of Carin campaign, celebrating the incredible career of Carin van Doorn, Billy’s family share their memories of her support.
Carin performed two life-saving heart surgeries on Billy – and their words show just how much her care and dedication meant to them.
Mum Charlotte said:
“Carin performed two open heart surgeries on our son Billy, the first as an emergency procedure when he was just over 2kg at four weeks old.
“I will never forget meeting her in a frantic and panicked situation as she was called in to operate on Billy. We had less than 5 minutes with Carin where she calmly explained Billy had a 50/50 chance of survival, before us having no option but to trust her with our baby.
“You may assume in these situations you won’t see the surgeon again other than for a brief follow-up, but after a 7 hour surgery (very late at night) Carin was back on PICU monitoring Billy whilst we sat by the bedside – and she returned every day, checking every part of his care.

“The second surgery, Billy was eight months old which was a complex reconstruction. Carin sat with us in our hospital room with a model of the heart, explaining in so much detail what she was planning to do. She answered all our questions and concerns. Without her, Billy simply would not be with us today.
“Carin’s care and attention for all her patients is profound, and she has dedicated her entire life to this service – performing over 200 surgeries a year across her 30 year career. She also does pro-bono work abroad annually with charities overseas, completing surgeries on children in deprived countries. There is no doubt she is leaving a legacy behind her.


“I could go on and on speaking about this remarkable woman but there is nothing I can do or say that would recognise the gratitude we have that Billy was under her care.
“It’s people like this who deserve to be recognised and remembered for their sacrifice, commitment, dedication and teaching of something that simply saves lives.
“Congratulations Carin, you deserve everything that retirement brings, and we celebrate you!”

After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit (LCHU), Carin van Doorn OBE will soon be retiring.
After dedicating her life to children’s cardiac care, we want to ensure that Carin’s legacy at Leeds lives on after she retires. You can help us do just that by donating to the ‘Because of Carin’ appeal.
To find out more about the ‘Because of Carin’ fundraising appeal, click here.
Heart mum Charlotte found out at her 20-week scan that her little boy Seth had Transposition of the Great Arteries.
Charlotte told us about Seth’s journey through treatment at the Leeds Congenital Heart Unit and how he is faring back home in Chesterfield.
written by mum Charlotte
We had three scans prior to the 20-week scan so we went into the scan room feeling confident that everything was ok.
When the sonographer stopped on his heart and told us they needed to fetch a doctor, we were shocked.
The doctor confirmed they also could see a defect and discussed with us what Transposition of the Great Arteries (TGA) is and that our baby would need surgery shortly after birth at Leeds.
Because it was a bank holiday we waited a week to see the cardiologist in Leeds to confirm what our local hospital had seen.
I remember hoping for that whole week that they were wrong and he was fine, but when we went for our appointment the cardiologist confirmed the same.
Seth was diagnosed with Transposition of the Great Arteries (TGA) at the 20-week scan in Chesterfield and had life-saving open heart surgery in Leeds at just 9 days old.
A balloon septostomyAt that point they could see no other defects but as he grew bigger they were hoping they would find an Atrial septal defect (ASD) as well, which would mean oxygen would mix more into the blood. As the weeks progressed it became clear that he only had TGA and he would have very little oxygen mixing.
We live over an hour away from Leeds and there was concern over me going into labour early, so an elective caesarean section was booked in at 38 weeks so the team could be ready to perform Seth’s balloon septostomy after birth.
is a procedure that widens a natural or congenital opening in the wall between the heart’s upper chambers using a balloon-tipped catheter. It is performed to increase the mixing of oxygenated and deoxygenated blood, improving blood flow and oxygen levels for babies with certain congenital heart defects. The procedure is a temporary measure to improve the patient’s condition until they can undergo their main surgical repair.
On the August 19th we travelled to Leeds for the C-section. Seth was born screaming but he desaturated very quickly and needed to be resuscitated and ventilated.
I just saw a glimpse of his hair before they rushed him away – my partner was able to go with him whilst I was stitched back up. I was really lucky to have a wonderful anaesthetist that kept my spirits up and supported me whilst I was alone in theatre.
The team then performed Seth’s balloon septostomy, and I was informed it went to plan. It was several hours before I could go to see him in the Neonatal Intensive Care Unit (NICU).
Nothing prepares you for seeing your baby attached to all the machines. I thought I had done enough to prepare for that moment – I’d contacted several parents in a similar position and spent hours on support pages and Google, but seeing my own child in that position, not knowing what the future would hold for him was the most awful feeling.
I wanted to celebrate his birth but I felt like I shouldn’t. He was doing well but I didn’t want to tempt fate. I struggled with telling people he was born, for the same reason.
Seth spent the first few days in NICU – he progressed off his ventilator and could be moved to the High Dependency Unit (HDU) there. He became very jaundiced and needed phototherapy but again, he did well and eventually after another three days he moved onto HDU on the children’s heart ward (L51) where he worked on gaining some weight before his surgery.
On day 9 he had his arterial switch. We walked him down to theatre at 8am and there are no words to describe the feeling of leaving your baby in theatre – not knowing if you would see them alive again. We had watched him look as though he was getting better, he looked so healthy the morning of surgery which made it so much harder but we knew the symptoms were being treated and ultimately he needed the surgery.
Carin van Doorn was Seth’s surgeon, we are so pleased that he had the best surgical team. We can’t thank her enough for what she’s done.

Eight hours later we got the call to say that he was doing well and we could go see him in the Paediatric Intensive Care Unit (PICU).
Those eight hours were the longest hours of our lives. We had tried to distract ourselves and go into the city centre but somehow the noise made us feel worse and we decided to stay close by in the hospital instead. I was so scared to answer the phone but equally was scared to miss the phone call.
The surgeon explained that there had been an issue with one of his coronary arteries but they got a good result in the end. They left his chest open in case they needed to go back in to resolve anything but the day after everything was still looking good so they decided to close his chest.
After only three days on PICU he stepped back onto HDU.
Seth’s weight continued to decline over the coming days. We went out to buy smaller clothes for him as he was now smaller than he was at birth. He was tolerating his feeds well through his NG tube but still continued to lose weight so it was decided he would start on a high energy formula with extra calories to help him gain some weight.
I struggle with agoraphobia and the idea of being over an hour away from all my family and friends, alone in hospital was enough to set off my panic attacks. CHSF helped us by putting my partner into the parent accommodation, so I didn’t have to be alone.
We had been paying for hotels prior to this, but couldn’t afford to keep on. We had been left a support pack, so I contacted the Family Support team on the email provided. We were so grateful to hear back the same day and have one less stress off our minds by being able to stay in CHSF’s Brotherton Wing accommodation.
We can’t thank CHSF enough.
Seth’s recovery from surgery went well, his scans were all looking good – so the last hurdle was weight gain and hopefully the removal of his NG tube. We transferred to our local hospital to be closer to home and finally on day 21 we were able to go home – as he was free from the NG tube and gaining weight.


Seth’s recent echos are all really good and his weight gain is continuing. He is still having regular blood tests at our local hospital for high calcium and iron but the levels are reducing each time so fingers crossed that on the next results he’s back to normal! He’s still taking diuretics but again, hopefully at his next echo he can stop them.
He is loving being at home with his big sister Belle and his little furry sister Bonnie. We are so glad to be home as a family and so thankful to everyone involved in Seth’s care.
We will be forever grateful.

After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit (LCHU), Carin van Doorn OBE will soon be retiring.
After dedicating her life to children’s cardiac care, we want to ensure that Carin’s legacy at Leeds lives on after she retires. You can help us do just that by donating to the ‘Because of Carin’ appeal.
To find out more about the ‘Because of Carin’ fundraising appeal, click here.
Dear CHSF supporter,
After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit (LCHU), I will soon be retiring.
It has been the privilege of my life to care for babies, children, teenagers and adults born with
congenital heart defects, and to walk alongside families through some of their most difficult days.
My journey began in the Netherlands. I then moved to the UK, training in Yorkshire and at Great Ormond Street and Birmingham Children’s Hospitals, before returning to Leeds to work as a young consultant for three years.
Over the next decade, I spent time working at Great Ormond Street Hospital and then in Denmark but in 2013 came back to Leeds to lead the Congenital Heart Surgery Team. I am proud to be part of our amazing team, and have had the privilege to operate on thousands of children and adults born with heart defects, and we have pioneered life-saving procedures for infants and adults alike.
Your support for Children’s Heart Surgery Fund (CHSF) since it formed in 1988, has helped enable every advance. What I’ve come to see during my time in post is that behind every surgery is a family’s courage – and their need for support. Our work is made possible not just by medical treatment but by care, compassion and community. This is why CHSF is so essential in supporting heart families.
Being awarded an OBE in the King’s Birthday Honours this year was a deeply humbling moment. But the greatest reward of my career has always been seeing the positive impact of my work on the lives of patients and their families.
I want to also dedicate this campaign to patients we were unable to save at the LCHU, despite our best efforts. Those who gained their angel wings too early continue to provide the inspiration to improve treatment and care for future generations.
If my work and career has touched you, or if you simply believe in giving children the best chance at life, I ask you from the bottom of my heart – please donate today.
You can give securely at:
justgiving.com/campaign/because-of-carin
Thank you – for your kindness, your support and your belief in CHSF’s mission and the future of the Leeds Congenital Heart Unit. It has been an absolute honour to be a part of this world-class team.
With heartfelt gratitude,

Ms Carin van Doorn OBE
Consultant Congenital Cardiac Surgeon
Trustee, Children’s Heart Surgery Fund

After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit (LCHU), Carin van Doorn OBE will soon be retiring.
After dedicating her life to children’s cardiac care, we want to ensure that Carin’s legacy at Leeds lives on after she retires. You can help us do just that by donating to the ‘Because of Carin’ appeal.

Share your story
This is a space for patients and families to share stories and messages with Ms Carin van Doorn OBE as she prepares to retire at the end of the year.
If you or your child was treated by Carin, we’d love for you to leave messages, photos and videos that we can pass on to her!
It’s a chance to say thank you, celebrate the impact that Carin has had and help us raise awareness and support for other heart families in the future.
Your story may also be shared by CHSF to inspire donations to our Because of Carin appeal and show the difference Carin has made.
Louie’s journey through complex heart surgery has been nothing short of extraordinary.
In this blog, Louie’s mum Emily shares the story of their time in hospital, the incredible care they received and the strength their family found through the toughest of times.
“On 8th April we woke up knowing that our boy was critically ill…we knew his heart was failing and we knew from the very beginning our Louie couldn’t be fixed and was undergoing a series of palliative surgeries to simply prolong his life.
“That day the lead cardiac surgeon sat us down and told us she wanted to do the impossible and try and save my boy. She wanted to take a chance on Louie – to give him a chance at life.
“Carin van Doorn had watched Louie’s progress and studied him since birth. She had already saved him twice with two heart surgeries performed with Mr Ali Al-Surraf (a magnificent heart surgeon whose presence alone has always made me smile from day one) .He always said he would find a way for Louie. They now had a plan to go in for a full repair with an 80% survival rate.
“I lay my precious boy on the operating table yet again knowing his heart needed to stop beating on bypass…putting his life in this incredible team’s hands with only hope and prayers it would beat again.
“14 painfully long hours later, on 9th April our boy’s surgery was complete. An extremely complex cardiac repair and they did the impossible. They changed history that day with my boy and gave him the greatest gift of all…life.
“Transposition of the great arteries, hypoplastic aortic arch, straddling tricuspid valve and a complex VSD sat between the bottom and top ventricle. Multiple other VSDs. HLHS. He now has near enough a full repair. He may need some tweaks in future with a leaky valve, but we’ll tackle that when/if the time comes. For now, he’s in the safest position he’s ever been in.
“Post surgery my Louie needed a further open heart surgery to fit a permanent pacemaker to support his heart. This was fitted by the lovely surgeon Mr Giuseppe Pelella, yet again another amazing human who has been involved from day dot.
Louie spent his first 6 months in hospital, being cared for by the Leeds Congenital Heart Unit team and Children’s Heart Surgery Fund
“They say it takes a village to raise a child; well, it took a whole hospital to save mine!”
“Afterwards my Louie had it rough. He has suffered two bleeds on his brain and possible sight impairment secondary to the area of the bleed. He had a chylothorax, pneumothorax, a blood clot in his jugular, infections, NEC, brain damage…the list goes on. But Louie being Louie is defying all odds yet again, showing substantial improvements daily! Because that’s what we do, it’s who we are, who we’ve made ourselves be – we dig deep and pull strength back every single moment of this journey.
“After 24 days in intensive care with multiple severe complications he was back on the cardiac ward being the incredible, strong, little soul he’s always been. There is one thing I know for sure – there is nothing my boy can’t do; there is nothing these surgeons can’t do! Louie’s team – his cardiologist Dr Bissell has never given up on him from the very beginning, his nurses and the love they show, they all are the greatest superheroes. Far too many incredible souls to mention in that building who all love and care for Louie dearly. Always rooting for our boy, and we’re always rooting for you!
“We will never be able to repay Carin van Doorn for taking that chance on our boy, for believing in him and for changing our lives forever. For believing in herself and having confidence in the process. For giving him the chance at life he deserves, the surgery he always deserved and fought so hard for.
“A nurse said to me ‘I never really believed in God… but if there is one it’s Carin van Doorn’. The woman that saved our baby boy. That quote will sit with me whole heartedly forever. So, here’s to your road of recovery little Louie – to a long, happy and meaningful life!

Louie was born via emergency caesarean section in Rotherham and his care was transferred straight to the specialist heart centre in Leeds
The early days
“But this isn’t where our story started or ended. Louie had been an inpatient since he was born waiting for this day. With just two weeks respite at home in between to spend time with his family.
“Tuesday 17th December our beautiful boy arrived earthside, from an extremely complicated labour into a cat 1 emergency section. Our boy was born needing significant heart surgery, fighting for his life. He was rushed straight to Leeds under the paediatric cardiology teams where he fought every second of every day, blowing us all away. Me and baby were both fighting sepsis on top of my boy’s heart and kidney defects.
“Leeds General Infirmary transferred my care straight to them from theatre in Rotherham via ambulance to keep us together. Louie travelled with his dad through Embrace and I went in my own ambulance.
“Our precious fighter went through his first heart operation within hours of being born and he came out of the other side like a warrior. He was looking at several bigger open heart surgeries in the coming weeks to save his life, which we had no doubts at all he would pull through. In the meantime, the ventilators and all the machinery were doing an incredible job.
“We cannot put into words how much we appreciate every single one of his surgeons, doctors and nurses – they loved him as much as we did, right from the beginning. Louie is made of the purest, strongest of souls and we knew then he would fight through anything they threw at him, and nobody could tell us any different. We were behind him every step of the way, my perfect child – sent from our angels in heaven. We didn’t get this far to give up now. We prayed and prayed for our boy to pull through posting on socials: ‘Me, Andy & our girls stand with open arms hanging onto all the love and prayers being sent our way. We need every single one of them‘.
“How Louie’s dad coped going from me in 1:1 high intensity care, to our boy in intensive care on the neonatal ward, giving us both all the love we needed is beyond words of courage and love – he’s the most incredible father to our little boy already.
Life in hospital
“Little did we know this was the start of a 5 month journey in hospital – of sorrow and strength. 5 months of my family being broken, living apart and isolated. My biggest two girls, Tilly (11) and Evie (12) went to live with their dad and his partner. My little Nellie (6) went to live with her dad, Nannan and grandad. We thought it was just a short-term fix. It is so admirable how all three of my girls have drawn the strength to power through all this and be understanding enough to know Louie needed us living in Leeds.
“I’ve never felt pride for any of my kids like this. Meeting their brother for the first time should have been a magical moment. Instead, he was laid down, fighting to be alive. My girls told me they had to be brave and come see him, as they wanted to make sure they had met him. They are words so humble and strong, that no parent should hear.
“We soon came to the conclusion my Louie was writing his own story. This wasn’t a straight motorway trip. This was a journey of windy roads and curves. Stopping off for a rest on the way at every stop he could make – and scaring his mum and dad to their core!
“You make a decision. A decision of hope. A decision to make hope a choice, and once you have made that choice, hope then becomes a feeling and it will run through us in every single step we take to save our boy.
“Louie stepped down from the Neonatal Intensive Care Unit on the 30th December and went to the cardiac unit on Ward L51.
“During his time on the Neonatal ward, Louie fought every single day. On Christmas Eve, we decided to come home and try and have some normality with our girls. The decision to leave a critically ill baby or leave our girls without their parents on Christmas Eve was a heartbreaking choice to make. Even the girls weren’t as enthusiastic as normal. They all wanted to go to bed early and were upset that their new baby brother wasn’t there with them.
“We then got a phone call from the hospital at 9:30pm on Christmas Eve, saying our boy’s lung had collapsed. They told us he was stable, and so we had to make a choice. Leave the girls and go to Louie or stay at home making Christmas as normal as possible. We made the incredibly difficult choice to stay at home and then go back to the hospital on Christmas morning – again leaving our girls. This wasn’t normal but we accepted we were now on a path that was recreating the word ‘normal’ for us.
“CHSF has been there for me even when I didn’t know I needed them”
“On 2nd January Louie underwent his first open heart surgery to save his life yet again. Louie was to have a procedure to repair his hypoplastic aortic arch. This was the first of many surgeries our boy was going to be subject to. After his surgery, we were informed that his tricuspid valve was connected through the hole in his heart, meaning the hole could not be closed.
“This meant our boy could not be fixed later and that he would instead have to go through a series of palliative surgeries to prolong his life – which would only take him to his thirties.
“The day after his surgery, Louie crashed. His heart stopped beating and the amazing Carin Van Doorn opened his chest in the Paediatric Intensive Care Unit (PICU) and massaged his heart back to life. She then proceeded with an emergency surgery to fit PA bands to help the leakage in my boy’s heart.

“I’ll never forget the pain we felt that day. The unknown. I didn’t know anything about the heart. I thought it looked like when a child draws it. We just didn’t understand. As time went on, me and Louie’s dad became experts on Louie’s condition – advocating for him with every breath we took. In my heart, I knew I couldn’t save my boy. The least I could do was become knowledgeable enough to fight for him and his condition.
“Louie spent a few more weeks on the Paediatric Intensive Care Unit (PICU) before coming back to the cardiac ward. After just 48 hours he went into cardiac arrest and a crash call went out to save my boy yet again. Louie’s dad was out parking the car and for him to walk in to dozens of doctors around our boy was heart breaking. Off Louie went back to PICU where we were told he had chronic heart failure. There was nothing left they could do. No surgeries could save him – he was too small.
“He was fighting to stay alive through a ventilator and heart medications. They were out of options for Louie. My mum and brother came straight through. We didn’t want to say goodbye – we couldn’t. Louie was too strong; we could feel it. He was meant to be here, our boy. And that he did. He proved everyone wrong and continued to progress with medications.

Louie came home for the first time March but suffered acute deterioration. Louie’s sister Evie played a huge part in saving her brother’s life as the family rushed Louie to hospital.
“Louie needed a period of stability to grow to be ready for another surgery.
“On 5th March we finally got to bring our boy home for the first time. It was agreed he could have some respite time and get to know his family properly. Those couple of weeks were amazing, being able to say goodnight to all my babies under one roof. To fall asleep with our boy laid at the side of us in his crib. To just be home.
“But it was the most terrifying time knowing I hadn’t brought my baby home for good. We brought an incredibly sick child home, knowing he had to go back to do it all over again. Knowing that his heart could stop at any time…it was hard.
Setbacks and finding strength
“On 30th March my boy crashed again…we shared the following post on Facebook…

“So here we were again. Head of Family Support at CHSF, Sarah Cherry asked me what it was like being back on the ward. I told her it felt like we were home again with our hospital family here and all the weight had been lifted from my shoulders as I walked in. This time we knew what to expect, we knew what was coming – we didn’t know whether that was a good or bad thing.
“But he did it!! After Louie’s big surgery, pacemaker surgery and all the complications in-between we spent weeks in ICU until it was time to step down back to the cardiac ward. (Louie decided he wanted to go back to ICU for another week in between this as he does. He missed them so much!)
Coming home
“Jokes aside we did it, Louie did it, our girls did it. Six months of this journey. Six months of pain, fear and ferocious strength. On 28th May we got to bring our boy home…this time for good.
“Louie has some issues with aspiration due to vocal cord palsy when the nerve was damaged in surgery – he has no voice and needs to be NG fed. He has multiple meds a day but he’s here and he’s alive – nothing else matters.
“They say it takes a village to raise a child; well, it took a whole hospital to save mine! Every team, every person involved, I really hope you know the impact you’ve had on our family.
“CHSF has been there for me even when I didn’t know I needed them… to just take one look at me and say, ‘Come on we’re going for a walk, or a coffee!‘. You saved me more times than once. The immensely amazing work you do is remarkable. The equipment you provided to save Louie’s life. The time, the effort, the love you’ve shown. It doesn’t go unnoticed. I thank my lucky stars every day that I had you there for our team. Pamper packs, bravery cards for my girls, birthday cards…the list goes on. Days out paid for Nellie’s birthday; we thank you from the bottom of our hearts. We really couldn’t have done it without you.
“There’s been days through this I really didn’t think I could go on. Times I’ve broken down and been on the floor because I couldn’t bear the pain anymore. There was always someone in that hospital to not just save Louie, but to save me, to save our girls, to save his dad.
“I had a process. If it got heavy, I came away for a walk, had a cry and came back in strong again. I refused to cry at Louie’s bedside; I needed it to be surrounded by positive strong energy. We found a win in every day – even on the darkest days you look for the win, however big or small. If you look hard enough, there’ll always be one shining for you.
“Through all this, we were given a room at Eckersley House, parent accommodation across from the hospital – run by The Sick Children’s Trust and supported by CHSF. This meant we were only ever a phone call away. Every complication, every crash call every surgery – this amazing charity made it possible for us to be there.
“The charity organised camp beds to be put in our room so the girls could sleep over and we could try spend time as a family – this was possible because of you.
“No words can describe how grateful we are. When our little girl was sat saying all she wished for on her birthday candles was to see her brother…off we went for a late-night sleepover with Louie in Leeds. Birthdays should be spent as a family and that we did! The gorgeous staff at the LGI had a footprint card ready for Nellie too, from her baby brother
“This is just a glimpse of Louie’s story, but now it’s time for our family to heal. To heal with a special place for LGI and all it’s amazing staff in our hearts forever. With families we have met along the way staying in our lives. With nurses and doctors that we miss dearly yet are so grateful for, in our memories forever. Because this isn’t just a journey for our boy – it’s the family you make along the way that keeps you going, a family of support, tears, tantrums and love. That’s exactly what the LGI became for us.
“Tonight, we will light some fireworks. Fireworks we bought for New Year’s Eve that our girls didn’t want to light until Louie was home for good. A celebration of Louie’s life and our LGI family.”

After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit (LCHU), Carin van Doorn OBE will soon be retiring.
After dedicating her life to children’s cardiac care, we want to ensure that Carin’s legacy at Leeds lives on after she retires. You can help us do just that by donating to the ‘Because of Carin’ appeal.




