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.
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