Many of you will already be familiar with Otto's journey over the past four months and will be fully aware of the care and support that Otto and his parents (Ami and Danny) gratefully received from charitable organisations such as The Lily Foundation. However, Otto's story is important and is worth summarising for all to read. This is a truncated version of events (time spent in meetings with medical staff probably total in the hundreds of hours) which hopefully captures both the tragedy and positive impact of Otto's life.

Since his birth, Otto had various and on-going medical issues (primarily an inability to swallow) which were undiagnosed or simply misdiagnosed.  Following his birth and after a near three-week stay in Newcastle's RVI Hospital, Otto and his mam were discharged on 12th April as medical investigations continued on an out-patient basis. Just over seven weeks followed at home with the occasional medical appointment or odd overnight stay in hospital, however this fleeting period at home was in hindsight the most cherished and invaluable time Otto and his family spent together. 

During these seven weeks at home, Otto smiled for the first time (and then wouldn't stop smiling), developed his social interaction skills, had a professional photo shoot, began to love his bouncy chair with its vibration setting maxed out, sampled his side-sleeper but much preferred the king-sized bed when allowed, and finally mastered the art of pooping just as his Dad started working (from home) at 9am and was therefore "unavailable" for nappy changes. Despite the medical checks and hospital appointments going on in the background, these seven weeks spent watching and nurturing Otto's growth and development were the most rewarding experiences Ami and Danny had the pleasure being part of.

Unfortunately, Otto began to show severe signs of ill health in the first week of June (with milder symptoms surfacing in the week before). After a protracted period visiting and re-visiting the A&E department and the GP with no success, Otto suffered significant heart and multi-organ failure on 4th June and was belatedly admitted to Newcastle's Freeman Hospital PICU ward in the early hours of 5th June - not before his parents were advised to say their final farewells in case Otto did not survive the transfer.

At the Freeman Hospital, Ami and Danny were soon to find out that their cheeky & happy little baby boy was in a medically-induced coma and being kept alive by an ECMO machine which externally supported his heart, lungs and kidneys. Additionally, Otto required the assistance of a ventilator, peritoneum dialysis and a multitude of drugs (adrenaline, milrinone, morphine, ketamine, plus others) to regulate heart rate, manage pain, offer sedation etc. Despite being stable on ECMO, it was made clear that Otto's situation was dire and his life was very much in the balance. It was simply a matter of taking each day as it comes whilst the clinical picture was being formed.

The next rollercoaster six weeks that followed in the PICU ward involved Otto advancing off the ECMO machine, having an unsuccessful trial being medically managed, CT scans, echo scans, chest x-rays, muscle biopsies, genetic testing and having a surgical procedure to implant a left ventricular assist device (LVAD) with the hope of progressing in order to be suitable for a heart transplant in 1 - 2 years time. All the while, Ami & Danny were living on-site at the hospital and routinely staying by Otto's bedside from 10am to 11pm.

Shortly after the surgery to implant the LVAD, Ami and Danny were informed that Otto's muscle biopsy results show that Otto has a complex 1 deficiency caused by mitochondrial disease. A disease which when identified in newborns with multi-system failure is significantly life-shortening, progressive and ultimately non-curable. After many painstaking discussions, the decision was reached to transfer Otto to St Oswald's Hospice on 20th July and withdraw his treatment so as to ensure the disease did not cause further undue suffering. 

On 20th July at 16:30 and in the relaxing surroundings of St Oswald's hospice, with the exception of sedatives and pain management drugs, Otto's treatment was withdrawn. Finally, Otto was free of the obtrusive ventilation tube and tapes across his face, LVAD pipes and the kidney dialysis, all of which had been a source of discomfort for six weeks. At his parents' request, Otto's nasogastric tube (which had been present since Otto was first born) was also removed so that they could fully see his lovely face. 

Otto George Malone (born 24th March 2021) sadly died on 21st July 2021 at 17:00, 24.5 hours after treatment was withdrawn. He was surrounded by his loving family and in the embracing arms of his parents, Ami & Danny Malone, when he peacefully passed away.

Otto's life has sadly ended but hopefully his story can inspire positive action. Otto, Ami and Danny collectively received a tremendous amount of support from charities such as CHUF and St Oswald's Hospice. Other charities such as The Lily Foundation are driving the research on mitochondrial disease and offer support to affected families. The Lily Foundation will inevitably be a pillar of support for Ami and Danny going forward as they come to terms with the tragic events over the last four months. 

Ami and Danny would very much appreciate your support in donating to any of the above charities so that Otto's story can hopefully benefit others. This JustGiving page is set up to donate to The Lily Foundation, please also visit pages set up for CHUF (change the web address to "/OttoGeorgeMalone") and St Oswald's Hospice  ("/OttoGeorgeMalone2").