For three rare, fantastic and emotional hours our little baby girl, Lottie, snuggled in my arms, wires and tubes emanating from every limb. It was now 7.15pm on the 11th August 2011 in Birmingham Children’s Hospital and suddenly our tiny fighter was taken from us. There are no words in any dictionary to describe that moment. Those present would I’m sure, have been able to read in our eyes, on our faces, all the terror that we were feeling.
Prior to her birth, we like most of you, thought that organ donation happens to other families, not ours.
Lottie was born seven weeks premature with an incredibly rare and undetectable liver disease called Neonatal Haemochromatosis. There was no reason for it, no family history, no bad diet….Nothing. Our terror strewn journey took us from Torbay Hospital to Exeter, then Bristol and finally after three weeks, to Birmingham Children’s Hospital where the diagnosis was handed to us by a collection of ashen faced medical people.
They broke to us very gently that the little angel we had wanted so desperately had fourteen days left on earth unless she underwent a liver transplant. To make matters worse no one in the world had transplanted a liver into such a tiny baby, but the icing on the cake of Hell was that whilst Lottie could possibly wait for two weeks the average wait for a suitable organ was two and a half months in the UK and that despite her being placed at the top of the ‘Super Urgent Donation List’
Of course they are just numbers…….. unless it is your very own loved one that those numbers apply to.
Lottie had fought so, so hard up to that point, we knew she was no quitter and I knew in my heart of hearts that if we just got that chance, then she was tough enough to get through the operation. We saw too the unbelievable skills of all the Doctors and nurses, surgeons and consultants all around, but the organ donation lottery was so stacked against us and as the days ticked by, a gradual realisation dawned that however positive we tried to be, three people like Lottie would end each day surrounded by distraught families. You see, in the organ donation lottery you either win everything or you lose everything. There are no £10 prizes.
During those fourteen days there were moments of pure undiluted heaven. When first she cried having been unable for weeks to do so due to the tubes. When first her huge dimples were revealed from beneath lashings of plasters and dressings and when first she was able to be dressed. Our love for her like any parents love for their child exploded but unlike most parents of such a young baby, we were overcome with respect and incredulity at how hard she fought against all the odds.
As day fourteen faded I think the horrors really started to override all else.
Day fifteen, the 11th August dawned and my wife and I could do no more than envelope Lottie with all the love we had for her, holding her head, folding her tiny fingers around ours and then that three hours of heaven as she stared up at us from my lap.
Little did we know that we had just won the greatest Lottery of them all.
When the surgeons whisked her from my arms at 7.15 that evening we knew that we may never see Lottie alive again and for nine hours we sat clutching pictures and memories before finally the phone rang in the early hours of the next morning and I Texted my brother the words ‘She’s Alive’
A brave family donated their child’s liver to Lottie who is now an extremely boisterous two year old. We want that family to know that not only did their gift of life save our daughter but through Lottie’s subsequent organ donation awareness quest, other lives have been and will be saved. That is quite a legacy from their little angel.
Although it’s not for 7500 other people waiting right now as Lottie did. It doesn’t need to be a lottery if we all recognise that tomorrow, to steel a line from a far lesser lottery, “it could be you”. So lets all sign on the organ donor register and shout about it to our family and friends. After all, there is no better gift than the gift of life.