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.