Amelie’s journey began long before her first breath. During her mother Eleanor’s 20-week scan, doctors detected that she had multiple congenital heart defects: transposition of the great arteries (TGA), coarctation of the aorta, and a ventricular septal defect (VSD). For Eleanor and her partner Sam, the news was overwhelming, a stark reminder of the fragility of life even before their daughter had arrived.
Eleanor’s pregnancy began in February 2020. From the very start, she affectionately called the baby “Sprinkle” due to the tiny size indicated by dating apps. Like many expecting parents during the pandemic, Eleanor faced scans alone, missing the comfort of having Sam by her side. By the 20-week scan, she hoped only to see that Sprinkle was well. The early excitement, however, quickly turned to fear. During the scan, the sonographer spent a long time examining the heart, asking Eleanor to turn and wiggle, eventually bringing in a second opinion. Eleanor’s heart sank when the sonographers confirmed that something serious was wrong.
The couple traveled to Southampton for a specialist cardiology scan. After fifty minutes of detailed examination, the cardiologist explained exactly what was happening: Sprinkle had TGA, a VSD, and a suspected coarctation of the aorta. The survival rate was reassuringly 85%, but the reality of the diagnosis still hit hard. Eleanor and Sam were asked if they wanted to consider termination. Though they were shaken, their decision was clear — they would give their baby every chance at life.
The rest of the pregnancy was a delicate balance of hope and anxiety. Despite the challenges of COVID restrictions, they celebrated small joys: decorating the nursery, hosting a small garden baby shower, and cherishing every kick and movement. The Tiny Tickers website became a key resource, providing support and reassurance through stories of other children facing similar heart conditions.
On 30th September 2020, Amelie was born at Southampton, weighing a healthy 7lb 3.5oz. She did not cry at birth but was pink and breathing. Precious moments in Eleanor’s arms were followed by her immediate transfer to neonatal care for monitoring and prostin administration. Eleanor recalls the first two hours as some of the hardest: having no baby in her arms or beside her, just waiting for news on her daughter’s wellbeing.
Amelie’s early days were fraught with challenges. She experienced apneas, required ventilation, and had multiple surgeries. On 7th October, she developed complications with feeding and heart rate, and she was transferred back to PICU for emergency care. Amelie’s appendix had perforated and had to be removed; a section of her intestine was infected, necessitating a stoma and total parenteral nutrition for recovery. Despite these setbacks, Amelie’s resilience shone through.
At just 13 days old, she underwent thoracotomy to fix her aortic arch. Within a few days, further complications arose, including VSD closure and a balloon septostomy, requiring additional interventions in PICU. Each day, her strength and determination amazed the medical team and her parents.
The pinnacle of her journey came on 4th November 2020, when Amelie underwent her full TGA switch and VSD closure. Post-surgery, her heart struggled to come off bypass and she was placed on ECMO for extracorporeal support. The sight of their tiny baby surrounded by tubes and machines was heart-wrenching. Yet, over the following days, her condition steadily improved. Trials on ECMO succeeded, her heart function strengthened, and her chest was eventually closed.
By mid-November, Amelie was recovering on the ward, gradually weaning off medications and feeding orally. Incredibly, she returned to breastfeeding successfully after nine weeks of pumping. Each small victory brought Eleanor and Sam immeasurable joy. On 1st December, after nine long weeks, the family received the words they had longed to hear: Amelie could go home.
Today, Amelie continues to thrive. She has her stoma for now, but the family looks forward to its eventual reversal. Their journey has also inspired advocacy: a family fundraiser for Tiny Tickers raised over £400, with plans for more efforts to support the charity’s vital work.
Amelie’s story is a testament to resilience, hope, and the extraordinary strength of a tiny heart. From a fearful 20-week scan to the triumph of recovery, she embodies courage and the miracles that expert care, parental love, and unwavering determination can make possible. She is more than a survivor — she is a beacon of hope, inspiring everyone who witnesses her journey.