When Tansy Simpson and Matthew Jukes welcomed their son Atlas in November 2024, they quickly noticed he struggled to feed. By seven weeks old, he still fit into newborn clothes and was significantly smaller than other babies his age. Initially, doctors suspected acid reflux, but as his condition worsened, they realized something more serious was happening.
A Mother's Concern
Tansy, a 40-year-old filmmaker and university lecturer from London, recalls feeling like an awful mother. The pediatrician grew concerned and referred Atlas to a feeding support team, then to a specialist at Evelina London Children's Hospital. There, doctors noticed his unusual breathing patterns. The couple, now 40 and 49 respectively, were advised to monitor him, but soon his breathing became sharper and he began vomiting, prompting an emergency call. Rushed to St Thomas' Hospital under blue lights, X-rays revealed the truth: it was never acid reflux. Atlas had an enlarged heart and fluid on his lungs.
Diagnosis and Surgery
Further tests confirmed Atlas had Ventricular Septal Defect (VSD), a hole in the heart affecting the connection between chambers, and coarctation, a narrowing of the aorta. Tansy explains that his heart had to work extremely hard to pump blood, stunting his growth and straining his system. A week after admission, Atlas underwent lengthy open-heart surgery lasting over seven hours to repair the coarctation, removing the narrowed part of the aorta and stitching it back together. The couple found comfort in the empathy and care from the surgical team, though the swift timeline left no room for research. They trusted they were getting the best care possible. The surgery was a success, but the family lived at Evelina for 28 days before discharge.
Understanding Feeding Difficulties
Feeding difficulties are common in newborns, but persistent issues can signal underlying problems. The NHS lists poor latching, reflux, low milk supply, and tongue tie as common causes. However, babies may also struggle to feed when unwell. Parents concerned about weight gain should consult their GP or midwife.
A Thriving Child
Reflecting on Atlas's recovery, Tansy says, 'I know every mum says this, but he is the happiest, bounciest boy. Apart from his scar, you would never know that he was so seriously ill, and it's thanks to the incredible team for saving his life.' This Sunday, Tansy will run the London Marathon for Evelina London to show eternal gratitude. Never having completed a distance as long as 26.2 miles, training has been challenging, especially as a new working mum. Her JustGiving page has raised nearly £8,000. She wrote: 'The doctors, nurses, trainees, speech and language therapists, play team, dieticians, occupational therapists, physios, therapists, dinner staff, cleaning staff – everyone – the entire Evelina team – are MIGHTY. They met us at our worst with compassionate, clear and supportive care; our son is now thriving, thanks to Evelina's world-class treatment. We get to be the family we always dreamed of…this little trio want every family to have the support, treatment and care we have benefited from.'
