In the fight against congenital heart disease (CHD), Millie’s story stands as a testament to resilience, hope, and the invaluable role of early detection. Born with a number of complex heart defects, Millie’s first few months of life were filled with unimaginable challenges. But thanks to her family’s unwavering strength, the dedication of her medical team, and the early intervention that saved her life, Millie is now thriving—meeting milestones, celebrating her first birthday, and inspiring others along the way.

The Start of an Unthinkable Journey

Millie’s journey began with excitement and anticipation, as her parents, Emma and her partner, prepared for the birth of their second child. It was February when Emma went for her 20-week anomaly scan, eager to learn more about her baby. The scan was supposed to be a routine appointment, one of many expectant mothers have, but what should have been a joyful moment turned into a whirlwind of uncertainty and fear.

During the scan, two sonographers took extra time to examine Millie’s heart, and Emma could feel the tension mounting in the room. The silence was deafening, and when she finally asked if something was wrong, the answer came: yes, there was something concerning with Millie’s heart. Emma was referred to a larger hospital for further scans, where they learned that Millie had aright aortic arch (RAA), a condition that could be linked to a serious genetic disorder. The doctors also suspected that Millie might have a vascular ring, a complex condition requiring specialized treatment.

At 30 weeks, Emma had another scan, and though Millie’s heart remained abnormal, there was no immediate indication of the need for surgery. Emma was cautiously relieved but still couldn’t shake the nagging feeling of what could lie ahead.

The Unexpected Diagnosis

Millie was born on July 30, 2019, and her arrival should have been a moment of celebration. But Emma’s joy quickly turned to anxiety when Millie, only three weeks old, underwent her first round of scans. The results were devastating. Millie’s heart was far more complex than anyone had anticipated, with multiple serious defects that required urgent attention. These included:

• Right aortic arch, where the aorta grew on the wrong side.
• Hypoplastic ascending aorta/transverse arch, meaning the aorta was severely underdeveloped, leading to difficulty pumping blood.
• Severe coarctation of the descending aorta, with narrowing 4cm wide—much larger than the typical 0.5-1cm narrowing.
• Gothic arch where the aorta came to an angular point, causing difficulty for her heart to pump blood over the arch.

• Unusually high arch, where the aorta grew too high, further complicating blood flow.
• Aortic circumflex, a rare occurrence where the aorta swept from the right to the left down the back of her heart, leading to airway compression.
• Vascular ring, composed of a small left aortic arch and patent ductus arteriosus, causing compression of the esophagus and trachea, which affected her ability to feed and breathe.

To make matters worse, Millie hadleft ventricular hypertrophy (LVH), meaning her left ventricle had enlarged due to the pressure from trying to pump blood through her underdeveloped aorta. Millie was showing symptoms of poor femoral pulses, high heart rate, breathing difficulties, trouble feeding, poor weight gain, and exhaustion.

These combined defects meant that Millie’s heart and vascular system were in a critical state, and the surgery required to repair her heart was both complex and urgent.

A 19-Hour Surgery: The Fight for Life

The day of Millie’s surgery, September 6, 2019, became one of the hardest days of Emma’s life. At just five weeks old, Millie was taken to the operating room for a19-hour open-heart surgery. Emma vividly remembers the pain of carrying her tiny, fragile baby down the hallway to the surgical theater, her heart heavy with fear. As the anesthesia took effect and Millie fell asleep, Emma knew that there was no turning back. It was a mother’s worst nightmare.

Emma and her partner spent hours in a waiting room, filled with dread. They received updates, but the news was always the same: “Call again in two hours.” The surgery was not going according to plan. There were complications, including amassive cardiac tamponade (a life-threatening bleed in the heart sac), which required the surgeons to go back into the operating room.

Finally, after 19 long hours, Emma received the call that they could come to see their daughter. When they arrived, the sight was nothing short of heartbreaking. Millie’s small body was swollen and unrecognizable, hooked up to numerous machines, her heart visibly beating through the dressing on her chest. The sight of her heart beating was both terrifying and reassuring, the only sign that Millie was still alive.

Millie’s chest was left open for four days following the surgery, and she was placed on the ECMO machine, which kept her body alive while her heart began to heal. It was Christmas Eve when her chest was finally closed. On Christmas Day, doctors attempted to extubate Millie and take her off life support, but she was unable to breathe on her own due tobilateral vocal cord paralysis caused by nerve damage during the surgery. Millie’s airway was too narrow to allow her to breathe unaided.

A Long Road to Recovery

Millie’s recovery was slow and difficult. She faced numerous setbacks, including trouble feeding and difficulty swallowing, which required a feeding tube to be inserted directly into her jejunum to provide nutrition. It was a challenging period for Emma and her family, but they held onto hope that Millie would recover.

Millie continued to face complications, including recurrent chest drains due to fluid buildup and the need for several surgeries to address these issues. Each procedure was more daunting than the last, but Millie’s fighting spirit never faltered. Emma was determined to stay by her daughter’s side, learning how to care for her as best as she could.

Finally, after months of hospital stays, Millie was able to come home, just in time for her first Christmas at home. Emma recalls the joy of finally holding her daughter in her arms after weeks of separation, but the road ahead was still uncertain. Millie continued to struggle with her vocal cord paralysis and needed ongoing care and therapy, but she was making progress.

The Importance of Early Detection and Support

Millie’s journey has been a difficult one, but it also highlights the critical importance of early detection and intervention. Emma is eternally grateful that Millie’s heart defect was detected during her 20-week scan, allowing for the immediate attention and care that Millie needed. Without this early diagnosis, Millie’s outcome could have been drastically different.

Emma has become an advocate for Tiny Tickers, an organization dedicated to raising awareness of congenital heart disease and providing support to families navigating the diagnosis and treatment of CHD. Tiny Tickers played a crucial role in Millie’s journey, offering support through their online group and providing a family support pack during the most difficult times.

Through her experience, Emma has also come to appreciate the life-saving importance of sonographer training and the use of pulse oximetry machines to detect heart defects early in newborns. Her goal now is to help raise awareness about CHD, ensuring that more families have access to early screening and the support they need to navigate this challenging path.

Millie’s Legacy: A Heroine for All

Millie’s story is one of incredible courage and resilience. Despite the odds stacked against her, she has proven to be a true fighter, overcoming the challenges of CHD and continuing to meet her developmental milestones. She recently celebrated her first birthday, a milestone that was once uncertain, surrounded by her family and friends who have supported her every step of the way.

Emma and her family will never forget the hardships they faced, but they are also deeply grateful for the medical team that supported Millie and for the early detection that ultimately saved her life. Millie is not just a survivor; she is a hero—a testament to the strength of the human spirit, the power of early detection, and the love of a family that will never give up.

Millie’s legacy continues to grow through the awareness she has raised and the families she has touched. Emma remains dedicated to sharing Millie’s story, advocating for better heart defect detection, and ensuring that other families facing similar challenges know they are not alone.

Millie is, and always will be, a shining example of bravery, resilience, and hope.