Introduction
Joe was born in North Shields in 2002. He was an incredibly happy, sociable baby who shared his life with two brothers and a sister who all adored him. Joe loved music, being sung to, travelling by car and watching trains, buses and emergency vehicles whizz past. He used an iPad to select tv programmes/videos and although he was non-verbal, we always knew what he was trying to say.
Unfortunately, Joe had his first seizure at 6 months and his development started to regress significantly by the age of 2 as seizures and hospital admissions kept on coming. Joe was diagnosed with Dravet Syndrome, a rare epilepsy condition at the age of 9 and despite targeted anticonvulsants, he averaged 3 tonic-clonic seizures a week. Despite all this his demeanour never changed - throughout his life he was happy, engaging, funny, strong and determined.
The story
On the 30th of May 2024, Joe was seen to be in an unusual position in bed which would usually be associated with a seizure and his family promptly attended to his side. Joe was found to be in cardiac arrest; he had stopped breathing and his heart had stopped. His family quickly began CPR and called an ambulance.
Following around 20 minutes of resuscitation, Joe’s heart restarted, and he was brought into Royal Lancaster Infirmary for post resuscitation care. This typically involves admittance to an intensive care unit for neurological prognostication, supporting the patient with ventilation, haemodynamic monitoring and management and seizure control to allow for assessment of meaningful recovery.
A referral was made to the Organ Donation Services Team, as sadly despite the efforts of all involved, Joe was not expected to make a meaningful recovery from this incident and there were plans to have discussions with Joe’s family to move towards the withdrawal of life-sustaining treatment.
On the 1st of June, a SNOD attended the hospital and assessed if Joe was a potential donor and worked closely with the consultant involved in Joe’s care. Together they met with Joe’s family and the consultant explained that unfortunately Joe was not going to survive his brain injury. Following this, the SNOD raised with Joe’s family that he was in a position to save the lives of others through organ donation and explained briefly how this would take place. Joe’s family had discussed donation previously and were positive about donation and believed that Joe would want to be an organ donor.
Joe’s family were supported through formal consent; this is a lengthy and in-depth discussion to sensitively assess for any risk of safety of transplantation, and to specifically outline which organs and tissues Joe may donate for the purposes of transplantation and/or research. Due to his age, and minimal medical history, he was in a position to potentially save the lives of many people, and his family gave consent for all organs, all tissues and all research.
Following the completion of formal consent, a number of investigations are required to ensure all information is available for the safety of transplantation, and to allow potential accepting centers to make informed decisions for their recipients. This includes numerous blood tests for tissue typing, virology screening, blood group and organ function. The radiology team attended the intensive care unit to perform an urgent chest x-ray. The physiotherapy team attended to perform chest physiotherapy. The nursing team performed an ECG. As Joe was a potential heart donor, an echocardiogram would be required for cardiac transplant centres to assess the suitability of his heart for transplant, but unfortunately UHMB does not have a cardiology service over the weekend. This is not uncommon at smaller hospitals and can be a source of significant delay as the only options are to wait until this can be performed or stand down from heart donation. However, in this instance, the consultant caring for Joe was accredited to perform a focused echocardiogram which would provide the information needed and allow the process to progress.
On the 2nd of June, potential recipients had been identified for liver, kidney and pancreas transplants and a team of specialist surgeons were mobilised to attend the hospital. Once all parties were ready, Joe was extubated and died with his family by his side. Very shortly after, Joe was taken to the operating theatre and following a respectful and dignified surgery went on to donate his liver and both of his kidneys.
A gentleman in his early sixties received a kidney transplant after waiting for several weeks. A lady in her early thirties received a kidney transplant after waiting for over two years. A gentleman in his late forties received a liver transplant after waiting for several months. Joe saved three lives that day and went on to improve the lives of many others. He was also a tissue donor and went on to donate his corneas to restore sight, as well as sclera, heart valves, bone, arteries and skin to aid in a number of different surgeries. Two people have received a corneal transplant thanks to Joe and his family, and four people, including a two-year-old girl, have benefitted from his sclera being used in ophthalmic surgeries.
None of this would be possible without the hard work and dedication of all those involved in the process to the Organ Donation Service, and of course without families like Joe’s giving the gift of life.