Congenital heart disease - Finley and Louie's stories

Heart defects are the most common type of anomaly that develop before a baby is born. BHF Professor Massimo Caputo has created mesenchymal cell plasters that could mean children won’t need to go through multiple open-heart operations in the future. Mesenchymal cells are a type of cell that have the ability to change into a range of cell types, including muscle and cartilage.  Louie and Finley were both born with congenital heart defects – here are their stories. 

Finley’s story

Finley, age 2 from Corsham in Wiltshire, was born with a congenital heart defect and received a particular type of mesenchymal cell injection treatment to try and keep his heart pumping. It’s these donor mesenchymal cells that BHF Professor Massimo Caputo is now using to develop his mesenchymal cell plasters.

Finley was born with a congenital heart defect called transposition of the great arteries, where the two main arteries supplying blood to the lungs and the body are in the wrong positions. At just four days old he had his first open-heart surgery to switch the major arteries back to their normal position. 

Finley’s mum, Melissa Hudd, explained: “Everything happened so quickly after giving birth. It was such a shock to find out that Finley had a heart condition and that he needed open-heart surgery. When he was born, I was only able to hold his hand for seconds through the incubator before he was whisked away to the ambulance.

“We were told to prepare from the start that the odds of him surviving without urgent surgery were not good and that the operation would be around 4 to 6 hours. After a long 12 hours, Finley finally came out of surgery but he was reliant on a machine that took over the function of his heart and lungs.”

There were complications from the first open-heart surgery and Finley’s heart function deteriorated significantly. The doctors tried a number of treatments but Finley was still stuck in intensive care for many weeks reliant on drugs and a ventilator to keep his heart going. So under compassionate grounds as a world-first, Professor Caputo used donor mesenchymal cells to inject directly into Finley’s heart during a second surgical procedure, in the hope they would help damaged blood vessels grow to increase the blood supply to the left side of his heart.

Melissa continues: “We nearly lost Finley when he was just 2 months old. Doctors called us into a room and told us they’d done everything they could. That’s when Massimo came to find us and explained there was one option left – to inject stem cells into the left side of Finley’s heart. He warned us that he couldn’t predict what the outcome would be. But we had absolutely nothing to lose. We had to try and give Finley every possible chance to live. 

“Within two weeks of the stem cell treatment we noticed a change in Finley. He came home for the first time when he was just 6 months old on a machine that still helps him breathe at night. 

“We can’t thank Massimo enough. I believe, if it wasn’t for the stem cell treatment, then Finley wouldn’t be here with us today. Finley is very feisty and very funny – he’s a real heart warrior and I tell him that all the time. 

“We don’t know what the future brings, but we are so grateful for Finley’s life to be turned around after the stem cell treatment as he now has a chance at life he might not have had otherwise. The stem cell plasters Massimo is now developing sound incredible. If they could give the gift of life and save other families from the emotional turmoil of their children having repeated open-heart surgeries, then that would be life-changing.”

Louie’s story 

Louie’s mum, Lottie Stokes, explains: “We thought everything was fine, but the day after I gave birth to Louie we were told his heart was plugged-in the wrong way around, a major blood vessel in his heart was too narrow and he had a hole in his heart, which all needed mending. It was fast talk about what the doctors were going to do to keep him alive right now, what they’ll do in the future and how many surgeries he’ll need.”  

Louie had his first open-heart surgery two weeks before his first birthday where surgeons used a synthetic patch to close the hole and a prosthetic valve to allow blood to flow around and out of the heart correctly. Louie then had the same surgery repeated when he was 4 years old to replace the materials fixing his heart, with multiple procedures in between. 

Lottie continues: “The worst part is saying goodbye to Louie at each operation. It’s very much a case of handing over your beautiful, tiny baby to surgeons just hoping they’ll look after them. 

“Now Louie is older he doesn’t let his heart condition stop him. He lives and breathes football and enjoys playing it with his friends, but he does find it exhausting at times. With his T-shirt on you wouldn’t suspect anything, but when you see his operation scars, you just think wow, this boy has been through a lot. 

“We’ve always talked to Louie about his ‘special heart’. He needs check-ups every 6 months and we know he’ll need a third open-heart surgery at some point but we don’t know when – it’s a waiting game. It’s not a fun game to play at all. 

“Our heart is with Massimo, he truly is our hero. If Massimo’s stem cell research can take away the need for other babies to go through these multiple surgeries, it would mean the world to families so they don’t have to go through this heartache over and over like we have.” 

Research we fund has turned ideas that once seemed like 'science fiction' into treatments and cures that save lives every day. But despite progress, millions of people are still waiting for the scientific breakthroughs of tomorrow, so that they can spend more time with the people they love. It is only thanks to the generous donations of the public that we can provide hope and find the cures and treatments of tomorrow. 

Update 24/02/23: A previous version of this page referred to ‘stem cell plasters’ – outside of quotations, this has been clarified to refer to ‘mesenchymal cells’.