Our first child, Otto George Malone, was born on 24th March 2021. From birth Otto had various and ongoing medical issues (primarily swallowing difficulties) which were undiagnosed or simply misdiagnosed.

We spent the first three weeks of his life in hospital followed by seven weeks at home.

During this home period, Otto smiled for the first time (and then wouldn’t stop smiling), developed his social interaction skills, had a professional photoshoot, began to love his bouncy chair with maximum vibration setting, sampled his side-sleeper but much preferred the king-size bed, and mastered the art of pooping just as Dad started working (from home) at 9am and was therefore ‘unavailable’ for nappy changes.

Unfortunately, Otto began to show severe signs of ill health and suffered significant heart and multi-organ failure on 4th June 2021. Otto was put into a medically induced coma and was being kept alive by an ECMO machine, requiring a ventilator, peritoneum dialysis and a multitude of drugs. Otto underwent surgery to implant a left ventricular assist device with the hope of progressing to be suitable for a heart transplant.

Shortly after the surgery, we were informed that Otto’s muscle biopsy results revealed a complex 1 deficiency caused by mitochondrial disease. After many painstaking discussions, the decision was reached to transfer Otto to St Oswald’s Hospice on 20th July and withdraw treatment.

Otto sadly died on 21st July 2021 at 5pm – 24 and a half hours after treatment was withdrawn. Otto was surrounded by his loving family and in our arms when he peacefully passed away.