When their six-week-old son Atlas began struggling to breathe, London parents Matt Jukes and Tansy Simpson believed he was battling a common cold. Doctors had initially reassured them nothing was seriously wrong, but their baby was actually fighting for his life against two congenital heart defects, leading to emergency open heart surgery within days.
The First Signs of Trouble
From birth, Atlas displayed several concerning symptoms that were initially attributed to less serious conditions. He had mottled skin, jaundice, and slightly blue hands and feet. The newborn struggled to feed, which medical professionals thought was caused by a tongue tie. By his second week, he was vomiting consistently after feeds, believed to be silent reflux.
"Around week five of his life he suddenly became very difficult, with a lot of crying and difficulty settling," Matt recalled. "Feeding also became more difficult and we noticed he didn't seem to be gaining weight."
Despite being discharged by midwives with reassurances about his health, Atlas's parents grew increasingly concerned. By six weeks old, his condition deteriorated significantly - he was vomiting, refusing to feed, and his breathing became distressed.
The Critical Diagnosis
During a doctor's appointment when Atlas was six weeks old, the couple received crucial advice that would ultimately save their son's life. The doctor told them to watch for two specific symptoms: laboured breathing and changes in nappy habits.
The very next morning at 4am, Tansy woke Matt in panic. Atlas had vomited immediately after starting to breastfeed, had gone limp, and was breathing with obvious distress. The couple immediately called an ambulance.
At the hospital, Atlas was diagnosed with congenital heart disease, specifically a coarctation of the aorta and a large ventricular septal defect (VSD). This devastating news began a 28-day hospital stay at Evelina Children's Hospital in London.
Recovery and Raising Awareness
At just eight weeks old, only six days after his diagnosis, Atlas underwent open heart surgery. "Post surgery ICU, infections and recovery are long, overwhelming and heartbreaking," Matt described. "Seeing your child sustained by machinery is indescribable."
The family's journey didn't end when they left hospital. Atlas required feeding every three hours and had a regimen of seven medications throughout the day. "We'd gone from having all these people looking after our son to suddenly being the ones responsible for him," Matt said.
Remarkably, by six months old, the permanent crying ceased and Atlas transformed into a "joyful happy curious boy". His most recent cardiology review brought more good news - the remaining hole in his heart had reduced to a size that wouldn't require further surgery, and he has now come off all medication.
The family is now determined to raise awareness about congenital heart disease, which affects approximately one in 100 babies born in the UK each year. Thanks to medical advances, survival rates have dramatically improved from 80% mortality in 1967 to 80% survival today.
Both parents are channeling their experience into fundraising. Cinematographer Tansy is running the London Marathon to raise money for Evelina Hospital, while artist Matt is donating artwork to Heart Research UK's anonymous heART project auction.
"Tansy and I decided it's important to talk about these things," Matt says, "because if our experience and our story can help someone else with their own journey and challenges, even if it's something different, then it's worthwhile sharing."
