Elliot’s story begins with his birth on the 26th January 2014. Elliot was a beautiful blue eyed boy who was always so happy and contented with a smile for all who met him. He was so wanted and loved and his mummy and daddy, Donna and Paul enjoyed ten wonderful months with him until their lives were changed forever when he became seriously ill on the 15th of November 2014.
The 15th started as a normal Saturday for Elliot but by midday it was obvious he was unwell and as a precaution Donna took him to Taunton’s Musgrove Park Hospital where his condition deteriorated rapidly and he suffered several cardiac arrests in a matter of hours, being only saved on each occasion by the tenacity of paediatric consultants who soon realised that they were unable to cope with his condition and they called in help from Bristol Children’s Hospital. An ambulance was despatched from Bristol and Elliot was transferred to the paediatric intensive care unit at the children’s hospital but before the ambulance left for Bristol the seriousness of Elliot’s illness was made very clear by the senior consultant accompanying him in the ambulance who warned that there was a chance he would not survive the journey. Donna and Paul made the trip to Bristol a little way behind the ambulance and on arrival were relieved to find Elliot had survived. Shortly after his admission doctors diagnosed Elliot as suffering from dilated cardiomyopathy, a very serious condition in one so young.
In the days and weeks which followed there were some signs of improvement but despite intense drug therapy and the very best efforts of so many dedicated and skilful people Elliot’s overall condition continued to deteriorate and Donna and Paul were told his only chance of survival was a heart transplant which could only be performed at Great Ormond Street Hospital (GOSH) in London. More devastating news was to follow when they were told that acceptance on the transplant list was and still is not automatic and that Elliot would need to go through a rigorous assessment process to gauge his suitability for transplant. There followed a very harrowing period of intense consultation between both hospitals, Donna and Paul prior to GOSH agreeing to take Elliot for full assessment.
Elliot was to spend his first Christmas at Bristol Children’s Hospital but by that time his condition had further deteriorated to the point where the cardiomyopathy had so affected the efficiency of his heart it could barely sustain his life, requiring surgeons to perform open heart surgical procedures in an attempt to improve his heart function. Despite the partial success of these procedures Elliot continued to deteriorate and heart specialists decided to use an extracorporeal membrane oxygenation (ECMO) machine to rest his heart allowing time for natural recovery assisted by drug therapy. The ECMO machine assists heart and lung functions by taking blood from the child’s body, artificially removing the carbon dioxide, then re-oxygenating the red cells and returning the blood to the body.
Surgeons at Bristol attached Elliot to the ECMO machine and were able to stabilise his condition but maintaining that stability required great skill on the part of doctor and nurses tasked with his care and with operating the ECMO on which his very survival depended. This was a very distressing time for Donna and Paul who not only had to witness the results of the almost brutal surgery necessary to attach the ECMO directly to Elliot’s heart but also had to cope with the minute by minute changes in his vital signs and the intensive activity of medical staff responding to multiple alarms generated by monitoring and automatic drug administering equipment. There were times, throughout his time in hospital, when Elliot was receiving drugs from 18+ automatic infusers continued .
On new year’s eve 2014 paediatric heart specialists at Great Ormond Street agreed to take Elliot for final in-patient transplant assessment which provided Donna and Paul with reason to be hopeful for his survival. Elliot’s total reliance on the ECMO machine complicated his transfer to London so arrangements had to be made for an ECMO equipped ambulance, at that time the only one in the country, to be driven from Leicester’s Glenfield hospital to Bristol to pick him up for onward transfer to GOSH. On the morning of new year’s day 2015 the ambulance duly arrived at Bristol and Elliot was successfully transferred into it and delivered to GOSH without complication with the exception that the streets of London were closed for the Lord Mayor’s new year parade requiring the ambulance to become part of it in order to get to GOSH — Elliot’s one claim to fame.
Within a days of arriving at GOSH Elliot was taken off the ECMO, which is only considered as a short term solution, and attached to a left ventricular assist device (LVAD). The LVAD effectively takes the place of the left ventricle by continuously taking blood from it and moving it to the aorta, which then delivers oxygen-rich blood throughout the body. The tubes carrying Elliot’s blood to and from the LVAD can be quite clearly seen in some of the pictures. The device is often referred to as a bridge to transplant but Elliot was still a little way from being considered suitable for transplant. The LVAD did however give time for the assessment to take place and shortly before his first birthday he was placed on the transplant list despite there being some signs of mitochondrial disease in his heart tissue.
At this time things appeared to be going better, even though Elliot was still very poorly, the swelling of his left ventricle seemed to be to be shrinking and his heart function showed signs of improvement. This did not last however and Elliot was to suffer several strokes as a result of blood clots caused by the LVAD, which is a known risk associated with use of these devices. Whilst he appeared to be suffering some paralysis scans showed no significant effect on his brain but with the risk of further strokes together with the slight improvements in heart function it was concluded that Elliot would be less at risk if he were taken off the LVAD. So with further invasive surgery the LVAD was disconnected and for some while Elliot was stable, even breathing without the need for the ventilator which he had been relying on for most of his time in hospital.
Over the weekend of the 28th February 2015 Elliot suffered a series of setbacks, including contracting sepsis and his heart function began to deteriorate once again. Doctors informed Donna and Paul that Elliot’s only hope was for him to be put back on the LVAD which would require further surgery but that carrying out the procedure with him so poorly was not without risk. Donna and Paul duly gave their consent and on the 2nd of March Elliot was successfully re-attached to the LVAD during his fifth four hour open heart operation. He returned to the intensive care ward which had been his home since arriving at GOSH on new year’s day and all seemed under control until sometime during the night when his condition worsened and he passed away despite the efforts of some of the best doctors in the world.
Donna and Paul were devastated at the loss of their beautiful little boy, having been at his side every day during his almost four months in hospital they had been in awe of the resilience and sheer determination to live of their brave hero. It was at this time they vowed to form a charity in Elliot’s name with the aim of raising funding to research and raise awareness of cardiomyopathy in children and mitochondrial disease , a possible cause of cardiomyopathy for which there is currently no cure, in the hope that one day other children will not have to suffer in the way Elliot did. True to their word Elliot’s Touch was formed in June of 2015 with the help and under the umbrella of the Somerset Community Foundation. In its first year Elliot’s Touch raised in excess of £40,000 as a result of Donna and Paul’s dedication and the help of an army of family, friends and complete strangers.
Elliot’s story continues …………………..