Stephen Grimley
Hebden Bridge to Rome - A Big Ride for Little Hearts
Fundraising for Children's Heart Surgery Fund
Story
Following the birth of our son Edward Francis Grimley in November 2013, Ted as he quickly became known, was found to have a heart murmur. Within 24 hours he was diagnosed with a serious heart defect. From the joy of welcoming our new baby Judi and I were plunged into a nightmare as a Ted's ultra sound scans and ECG traces revealed that he would be unlikely to live beyond his 5th birthday without open heart surgery. The first week's of Ted's life were spent in a blur of tests, scans, and consultations as we sought to understand the full extent of his condition. The cardiologists at Halifax and Leeds identified a number of holes in Ted's heart plus a severe narrowing of the pulmonary valve, constituting the classic indicators of a Tetralogy of Fallot.
If left untreated, Tetralogy of Fallot carries a 35% mortality rate in the first year of life, and a 50% mortality rate in the first three years of life. Having been dealt this crushing blow we were handed the life line that is the miracle of modern surgical techniques. We learnt that the team at the Children’s Heart Theatre, based at the Leeds Congenital Heart Unit, at Leeds General Infirmary (LGI) could offer open heart surgery to repair the holes in Ted's heart and widen the restricted valve. Ted was given a positive prognosis that meant we could expect a 98% chance of success, but that it was vital that this intervention took place no later than his first birthday.
We spent the next 12 months in the care of the team at Leeds, meeting the cardiologists at regular intervals. As the date of the operation drew nearer we were introduced to the surgeon and invited to meet the team at the specialist children's heart surgery ward at the LGI. It was a difficult time, but having the unit close at hand was reassuring particularly because, as "Blue Baby" Ted could literally turn blue if his heart delivered too little oxygen into his blood. These "Spells" as they are known, are reasonably common, but potentially life threatening. We were advised to avoid travelling long distances. We were given emergency access to the ward in case Ted began to Spell, as without prompt treatment these attacks could be fatal. The Children’s Heart Surgery Fund provided advice and reassurance throughout the year, helping us to cope with our new circumstances.
Fortunately Ted developed normally, and proved to be a real character full of fun, energy, and love. He was quick to win over everyone who met him, even before they found out about his condition. Such was Ted's happy mood (he never cried!) and comical eye for mischief that we all found it hard to believe that Ted was suffering from a life threatening condition. We decided to get on with life just like any new family. But as Ted reached 11 months we began to notice his lips becoming blue and that he often became breathless when playing. The cardiologists confirmed it was time to prepare for the operation. Having managed to get over the initial shock of his diagnosis the previous year, and almost forgetting Ted's condition, we were suddenly thrust into a chain of events that would lead to his open heart surgery within just a few days or weeks. Ted was scheduled to be admitted as soon as a slot became available; we would need to have our bags ready to head to the LGI at a day's notice.
It seemed impossible to believe that we were soon to hand over our precious son for such a complex and dangerous procedure. We could nt help imagining the incredible challenges a surgeon must face in operating on such tiny babies, with minuscule margins for error. A parent's natural instinct is to protect their children from harm and pain; we had to keep reminding ourselves that there was no alternative. Perhaps more reassuringly we knew that the unit's 98% success rate meant that we had every reason to be confident. Nevertheless we felt guilty and terrified to be packing Ted, his pyjamas, and his Teddy into the car as we set off to Leeds on the day before his operation was scheduled in early December 2014. Family and friends waved us off in floods of tears.
We soon felt reassured and composed as we were greeted by the team at the LGI. The Leeds Children's Heart Surgery Ward at the LGI became our home for the next 3 weeks. As parents we were able to stay on site in family rooms provided by the fund raising of the Children’s Heart Surgery Fund, whilst a team of doctors, surgeons, and nurses gave Ted everything he could possibly need to ensure a successful operation. I can't imagine how we would have felt if we had been forced to travel home each day.
The family rooms were vital in keeping us together and helping Ted feel at home during this difficult time. We were always there for Ted throughout his stay, feeding him, playing in CHSF funded play room, and reading his favourite bedtime stories. There was not one moment of distress; to Ted it must have seemed like a great adventure with new toys, Christmas decorations, and a team of nurses looking after his every need, He made full use of the space to practice his newly acquired walking skills.
Ted's operation was scheduled and cancelled 3 times, but we were just thankful that Ted's case was seen as less critical than other babies needing more urgent interventions. We met many other babies and parents on the ward, often suffering with much worse conditions than Ted. Miraculously they had all started to make good recoveries just days after their operations. We began to realise what an incredible team we had working for us, and how lucky we were that modern medical science had found a cure for Ted's condition. Only 30 years ago there would have been no hope for any of the babies on the ward.
We eventually took Ted down to the operating room at dawn on a sunny but freezing December morning. After reading his favourite stories, and one last cuddle, we held back the tears as we said goodbye to him; it was hard not imagine that this might be the last time we would hold him. Poor Ted must have wondered why we were handing him over to the strangers in masks and gowns. We felt so guilty. He trusted us and we could nt help thinking of the danger we were placing him in. We simply had to remind ourselves of the 98% success rate and the consequences of taking no action. Even so, we still had to accept that there was a 2% chance we would nt see him again. Believe me, this suddenly seems like a very large percentage at that moment.
Having composed ourselves, Judi and I then headed off for a surreal day spent wandering aimlessly around Leeds as we tried to distract ourselves for 9 hours, writing Christmas cards in cafes whilst we waited for the most important phone call that we would ever receive.
After about an hour we decided to head to Judi's dad's house a few miles from the hospital, Exhausted by the strain we both fell asleep. It had been a sleepless night and an early start. It was all too much. Having the unit in our community close to our relatives and friends made a huge difference. We could feel close to Ted and the people closest to us when it really mattered.
I woke around 17.00. I checked my phone, There had been no news. 9 hours had already passed. There followed the most worrying hour of my life as we exchanged worried glances, trying not to speculate on the absence of updates. When the call finally came it could not have been better news. The surgeon confirmed that the operation had been a success. We rushed back to the hospital and headed to intensive care. We found Ted wired up to machines, tubes, drains, and drips, with a large taped repair to his chest. We were shocked to see him like this but all that mattered was that he was still with us and had every chance a full and quick recovery.
Seeing Ted come round, recognise us and smile, was better than joy we had experienced at his birth, particularly because we now only had good news to deal with. Within days Ted was off the drip and soon sitting up and feeding from his usual bottle, munching on toast, and sitting in a high chair. True to form his energy returned and he even managed to stand up, pulling out his drains and tubes. Unfortunately this led to further operations, caused by a collapsed lung, resulting from his drains becoming dislodged, allowing air into his chest cavity. Ted did nt seem to mind, and by now major surgery had become the norm!
After 3 weeks on the ward we were amazed to find ourselves heading home for what will always be the most magical Christmas ever. Ted was back in his cot just 2 days before Christmas eve - with almost no evidence of the ordeal he had been through. Since then he has made a complete recovery, We are eternally grateful to everyone who helped save his life, and will always be in the debt of the Leeds Children's Heart Surgery Ward at the LGI, and the Children’s Heart Surgery Fund that support the unit.
It is now time to show my gratitude.
On Sunday 24th of July 2016 I will set off from Hebden Bridge to cycle 1400 miles to Rome via Belgium, Luxembourg, France, Germany, Austria, and over the Alps along the 9000 feet climb of the Stelvio pass into Italy. I will ride between 100 and 140 miles per day, alone , and unsupported, carrying only the minimum gear. I aim to arrive in St Peter's Square, Rome, on Friday 5th August.
Despite being a fell runner, cyclist, and 15 times marathon runner this journey will be by far the most difficult physical and mental challenge I have ever attempted. It will also be the longest period I have ever spent in my own company. I hope I might learn something about myself and life along the way. The hope is that along the way I may meet the some of the kindness and warmth of spirit that I encountered in the LGI during Ted's illness. I certainly learned some important life lessons in the time I spent with Ted under the care and expertise of the Leeds Children's Heart Unit, in what became the inspiration for my modern day pilgrimage.
I hope this journey will encourage donations to my fund raising for the Children's Heart Surgery Fund - chsf.org.uk - whilst helping to raise awareness of the incalculable benefits of the work of the Leeds Children’s Heart Unit, and its value to the people of Yorkshire and Humberside.
Established in 1988, the Children’s Heart Surgery Fund is a charity providing support for children and adults born with Congenital Heart Defects and their families. CHSF provides valuable equipment, resources and research, as well as providing a support service for both the children and their families along the way.
Based at the Leeds General Infirmary, CHSF covers the regions of Yorkshire, Humberside and North Lincolnshire. Around 400 children from these regions need open heart surgery every year. CHSF aim to ensure these children have the best possible chance of survival and to help their families in whatever way needed during their stay in hospital.
This is my way of saying thank you for the life of my son Ted, to everyone at Children’s Heart Surgery unit at Leeds, on behalf of Judi, myself, our families, friends, neighbours, and work colleagues and everyone else who has benefited from the work of this amazing unit.