At our 20-week scan, the world seemed to stop. What should have been a routine check, a peek at our baby’s tiny fingers and toes, became the moment we discovered that our son, Otis, had congenital heart disease (CHD). The sonographer’s calm tone belied the gravity of the news, and soon we were referred to a fetal medicine unit, where specialists explained exactly what was wrong.

Otis was diagnosed with two serious heart defects: coarctation of the aorta (COA) and a large ventricular septal defect (VSD). Each syllable of the diagnosis echoed in my mind, leaving us both terrified and determined. I chose to have an amniocentesis to rule out DiGeorge syndrome, and thankfully, the results came back clear. From that moment, our pregnancy became a series of scans, consultations, and careful monitoring. Weekly growth scans became a routine, as Otis’s growth began to lag.

Living an hour and a half from the hospital, we knew delivery needed to be carefully planned. At 38 weeks and 6 days, I was booked for induction — a precaution to ensure Otis would arrive in the safest environment possible. On September 6th, 6lbs 15oz of courage and determination arrived in our arms. But he was whisked straight to the neonatal intensive care unit (NICU), leaving me both relieved and anxious. Three hours later, I finally met my beautiful baby, my heart swelling with love and fear all at once.

In the days following his birth, Otis was carefully monitored. When his ductus closed, his stats stabilized, and surgeons advised waiting until he gained more weight before surgery. We were discharged after six days, cautiously hopeful.

At home, weekly appointments became a lifeline. Echocardiograms, weight checks, and constant vigilance marked our days. But soon, Otis began to struggle — losing weight rapidly, breathless, and increasingly fussy. Our worry intensified until, on October 2nd, he was admitted to the high dependency unit (HDU). He required high-flow vapotherm oxygen and tube feeding. The surgeons scheduled surgery for October 5th, but a sudden temperature spike delayed the procedure.

Finally, on October 11th, Otis underwent a nine-hour surgery that would forever change our lives. We waited anxiously, hearts in our throats, as the surgeons worked to repair his tiny heart. When the surgeon emerged, he explained that Otis’s arch was hypoplastic and the VSD larger and in a more complex position than initially thought — yet, remarkably, both issues had been successfully corrected. Relief washed over us in a tidal wave of emotion; our little boy had survived the operation we had feared most.

The next five days in the paediatric intensive care unit (PICU) were crucial. Otis responded well to medications, his stats remained stable, and milestones came one by one: drains removed on day two, extubation on day three. He was then transferred back to HDU on low-flow oxygen, pacemaker and lines in place, for another four days of careful monitoring. Slowly, we began feeding him again — the first time in weeks he latched properly. With perseverance, his strength returned, and he began to gain weight once more.

After moving to the general ward, our relief was short-lived. Another spike in temperature and abnormal blood results tested our patience and courage. But thanks to tireless staff, careful medication adjustments, and our unwavering attention, Otis gradually stabilized. After four long weeks, we were finally allowed to take him home — a moment that felt surreal after the emotional rollercoaster of the hospital.

Today, eight weeks post-surgery, Otis is thriving. He weighs 9lbs 11oz, is exclusively breastfed, and his scar has healed beautifully. Follow-up appointments are reassuring, and we have been told he likely won’t require any further surgery. His resilience is astonishing. Our little heart warrior has taught us what strength truly means — to endure pain, to keep fighting, and to thrive despite immense challenges.

Looking back, our journey has been filled with fear, uncertainty, and countless tears. But it has also been illuminated by hope, compassion, and the incredible dedication of medical staff who guided us through every high and low. Otis’s courage, even as a tiny baby, reminded us that heart babies are warriors, born with strength that defies their size.

Otis’s story is more than a tale of medical challenges; it is a testament to the power of love, perseverance, and the unbreakable bond between parents and child. Every scan, every medication, every hospital night was a step toward today — a home filled with laughter, feeding sessions, and the soft rhythm of a child growing stronger by the day.

As his mother, I could not be prouder. Otis has faced what many adults could not endure, yet he emerges with a spirit full of life and a heart that has already proven its courage. We now measure our days not by anxiety, but by joy — every smile, every breath, every tiny milestone a reminder of the journey we’ve survived together.

Our hope is that sharing Otis’s journey will inspire other families navigating CHD, reminding them that even in the darkest moments, resilience and love can carry you through. Otis is living proof: our smallest hearts can possess the biggest courage.