Introduction: A Pregnancy Through Lockdown

Esme’s story begins in the summer of 2020, a year that will forever be marked by the global lockdowns brought on by the COVID-19 pandemic. For her mother,Hannah, Esme’s pregnancy was shaped by the uncertainty and isolation that came with the pandemic. The world outside was in chaos, but inside, Hannah’s pregnancy seemed to be progressing as expected. However, little did they know, Esme’s journey would take a much different path than anticipated.

A Rough Start: Failure to Thrive

When Esme was born in July 2020, it was a time of mixed emotions. The world was in the midst of a pandemic, and the usual excitement of welcoming a newborn was tempered by the restrictions and fears of COVID-19. Despite these challenges, Esme was born healthy, but quickly, concerns arose. Right from the beginning, she had trouble with feeding, which raised red flags. Esme was unable to gain weight, and it was soon diagnosed that she was“failing to thrive.”

Hannah and her partner were regularly visited by community nurses, who weighed Esme each week to monitor her progress. But despite all efforts, Esme’s condition didn’t improve. Hannah recalls the fear that consumed her as she watched her daughter struggle to gain weight, feeling helpless and unsure of what was causing the issue.

A Cough That Led to a Diagnosis

Esme’s struggles continued until she was 11 months old, when she developed a persistent cough that lasted for about a week. Initially, Hannah thought it was just a simple cold or something minor. But when Esme’s breathing began to become labored, they decided to take her to the doctor. This seemingly small concern turned into a hospital stay when Esme was diagnosed withbronchiolitis.

At the hospital, things didn’t improve. Esme’s oxygen levels remained dangerously low, which prompted further tests. After a week of monitoring, an X-ray revealed something unexpected: Esme’s heart was enlarged. This discovery led to more tests, and soon, doctors found a heart murmur, a sign that something was seriously wrong with Esme’s heart.

The diagnosis came swiftly, and it was both a shock and a relief for Hannah and her family. They finally had an answer to Esme’s struggles.Esme had a congenital heart defect called atrioventricular septal defect (AVSD), a condition that was not detected during her earlier life. AVSD is a rare heart defect that affects the valves and chambers, resulting in poor blood flow and increased strain on the heart. The condition was severe, and the doctors informed Hannah that Esme would need

open-heart surgery immediately.

The Waiting Game: A Delay in Surgery

Though the doctors were ready to act, there was one hurdle that had to be overcome before surgery could take place: Esme was battling aninfection. The doctors made the difficult decision to delay surgery until the infection cleared, leaving Esme and her family in a limbo of uncertainty. The next few weeks were filled with anxiety, as they waited to see if the surgery would still be possible and whether Esme’s heart would be strong enough for the procedure.

Open Heart Surgery: A Fight for Life

Finally, ten days before her first birthday, Esme was able to undergo the open-heart surgery that would change her life. The stakes were high—surgeons weren’t sure whether they would be able to repair Esme’s heart or if a valve replacement would be necessary. ForHannah and her partner, this uncertainty was terrifying. The thought of their baby undergoing such an invasive procedure, so young and fragile, was more than they could bear.

The surgery itself lasted several hours, and while it was incredibly challenging for the family, the relief came when the surgeon informed them that the surgery had been successful. They had been able to repair Esme’s valve and delay any further surgery until she was much older.

Recovery: A Long and Challenging Road

The first few days after Esme’s surgery were fraught with difficulty. As expected, Esme was swollen and needed to be carefully monitored as her body recovered. She was placed ontemporary pacemaker support, but doctors were unsure if she would need a permanent one. On the day of her first birthday, the doctors removed the pacemaker wires, and Esme showed signs of returning to her normal self. From that moment on, she began to thrive.

Esme’s road to recovery wasn’t short or easy. She had spent several weeks in the hospital, undergoing intense medical care, but with each passing day, she grew stronger. Her energy returned, her feeding improved, and her smile became a source of strength for her family.

Gratitude for Early Detection

Looking back on the experience, Hannah is filled with gratitude for the early detection of Esme’s heart defect. Though the journey was harrowing, it is clear that without the right diagnosis at the right time, things could have been very different. Hannah firmly believes that if Esme’s heart condition had been detectedduring pregnancy, the entire experience would have been less traumatic and more manageable for their family.

Esme’s AVSD could have been caught earlier with routine fetal heart scans, but unfortunately, the condition went undiagnosed until Esme’s symptoms became severe. This delay in diagnosis could have had devastating consequences, as babies with untreated AVSD can suffer from heart failure and other life-threatening complications. ForHannah, this experience has fueled her passion for raising awareness about the importance of prenatal screening and the role it plays in saving lives.

The Gift of Life: A Thriving Child

Today, Esme is three years old, and you would never guess the health battles she faced as an infant. To outsiders, she appears as a normal, healthy child, full of energy and joy. She’s thriving and growing, and her heart condition is under control. While she will continue to need regular heart check-ups, she has shown no signs of further complications.

Esme’s journey has been a testament to the strength and resilience of children born with heart defects. Her story is one of hope and survival, and it serves as a reminder to parents everywhere that even when the odds seem insurmountable, there is always hope.

Advocacy for Early Detection

Esme’s story also serves as a call to action for better access to early heart defect screenings for all babies. Hannah advocates for the widespread use of pulse oximetry testing at birth to help detect heart defects early. This simple, non-invasive test measures the oxygen levels in a baby’s blood and can help identify life-threatening heart conditions that might otherwise go unnoticed.

Hannah’s experience has also sparked a passion for sharing her story with others, especially those who might be facing similar challenges. She hopes that by raising awareness about the importance of early diagnosis, she can help other parents avoid the emotional and physical toll of undiagnosed heart conditions.

A Message of Hope

For parents who are beginning their own journey with a child facing a heart condition, Hannah’s advice is simple: “Stay hopeful, trust your instincts, and never give up. With the right care and support, your child can overcome even the greatest obstacles.” Esme’s story is a testament to the power of early detection, skilled medical care, and a family’s unyielding love and dedication.

Esme’s future is bright, and the family is confident that, despite the challenges they have faced, Esme is ready for whatever comes next.

Conclusion

Esme’s story is one of miracles, love, and resilience. From the moment she was diagnosed with AVSD to her successful surgery and speedy recovery, Esme has proved time and time again that heart warriors are some of the strongest and most determined children on earth. With the continued support of her family and medical team, Esme will continue to thrive and inspire others with her incredible journey.