At just six weeks old, baby Atlas Jukes went from displaying typical cold symptoms to facing a life-threatening condition that required open-heart surgery. His parents, Matt Jukes and Tansy Simpson, initially thought their son had a harmless winter cold. Instead, what followed was a harrowing experience that would change their lives forever.
Describing the situation, Matt, an artist from Peckham in South London, recounted how a normal day quickly turned into a nightmare. “Atlas became very difficult, crying a lot and not settling. He also wasn’t feeding,” he said. Concerned, they took him to A&E, where initial tests seemed to indicate a common illness. “Everyone felt it was bronchiolitis—a common chest infection that affects under-twos,” Matt added.
The turning point came when a consultant recommended an X-ray, a decision the family would be eternally grateful for. “By 11 am on January 10, 2023, we discovered the truth. Atlas had fluid in his lungs and an enlarged heart. His ‘cold’ turned out to be a congenital heart defect,” Matt explained.
Atlas was diagnosed with a coarctation of the aorta and a large ventricular septal defect. Within a week, he underwent open-heart surgery at Evelina Children’s Hospital. “My wife carried him as we walked to the operating theatre. We were petrified,” Matt recalled. The surgery lasted over five hours and, upon receiving the news of its success, relief washed over the family.
For the next month, they lived in the hospital, surrounded by machines and uncertainty. During this trying time, Matt found solace in storytelling. He created imaginary adventures for Atlas, even sketching the landscapes he dreamed of visiting with his son. These drawings later inspired his contribution to the heART project, a charity auction supporting Heart Research UK.
“Those stories weren’t necessarily the happiest, but they represent intimate moments between my son and me,” he shared. Matt’s abstract and emotional artwork reflects the memories and feelings tied to their experiences.
Atlas was discharged from the hospital on February 4, 2023, and is now thriving, having come off all medication. “We’d gone from having all these people looking after our son to suddenly being the only ones responsible for him,” Matt said, reflecting on the transition to home life.
Congenital heart disease affects approximately one in 100 babies born in the UK, according to the National Health Service (NHS). Treatment varies based on the specific defect but often involves surgery to restore normal function. Thanks to significant advancements in medical technology and research, survival rates have dramatically improved. In 1967, 80% of babies with congenital heart defects did not survive; today, around 80% do.
Matt emphasizes the importance of support networks for families dealing with similar challenges. “There’s a community of wonderful people around what we call ‘heart babies’. That support network has been incredible,” he noted.
Every year, Heart Research UK hosts the anonymous heART project, where artists submit work for charity auction. This year, notable contributors included actor Russell Tovey and musician Robert Smith of The Cure. Matt expressed his motivation for participating: “If my experience and my story can help someone else with their own journey and challenges, then it’s worthwhile sharing.”
His artwork, titled “Misremembered Landscapes,” aims to evoke emotions through colors and shapes, inviting viewers to interpret the sentiments behind them. “What I want to show is that even though we all see the world in different ways, we are united by the way we feel,” he summarized.
Since the project’s inception in 2018, over £515,000 has been raised for heart research, aiding countless families facing the same daunting path. Matt’s journey with Atlas not only highlights the resilience of families dealing with congenital heart defects but also underscores the critical need for ongoing research and support in this field.
