I found out last night that Jessica’s cardiac consultant is retiring at the end of the year. It feels like a rug has been pulled out from underneath my feet. This is the consultant that diagnosed Jessica, the consultant that has been part of our journey from the very start. This is the consultant who spoke to his colleague and gave us hope that in-utero surgery was an option and was there when it took place. This is the consultant who has seen Jessica’s heart, and the changes made by each surgery, through the whole of the journey. And now he will no longer be part of it.
This is not the first time we have lost a key member of Jessica’s cardiac team. Two years ago, the wonderful surgeon who performed her open heart surgeries left to work in the States. The doctor who carried out her in-utero surgery is also now working Stateside, as is the one who completed the second part of her hybrid procedure.
When you have a child with a complex medical condition, you place a huge amount of trust in the medical teams caring for them. These are the people who have your child’s life, quite literally, in their hands. These are the miracle workers, the people you are more grateful to than you could possibly express. These are the people who have saved your child’s life time and time again. To suddenly have to start again and build up that trust with a complete stranger is utterly terrifying.
From the end of this year onwards, almost everything will be new. Jessica will have a new cardiac consultant for her heart check-ups and a completely new surgeon for her next operation. Yes, there will still be some members of the medical team that we know, but these are not the key players. These are not the people in whom we have placed that huge amount of trust.
Jessica’s second open-heart surgery was particularly complex; she was in theatre far long than we had anticipated and I will never forget the anaesthetist coming up to talk to us after the operation was over, telling us just how tricky it had been and that a less-skilled surgeon would not have been able to perform the procedure. At the time, with no inkling that our surgeon had any plans to move on from that unit, we were just so thankful that Jessica’s surgeon was the top surgeon at that unit. Those words haunt me now. Because next time, it will be a new surgeon, a surgeon with perhaps a little less experience, a little less skill. I have no doubt that whoever performs Jessica’s next operation will do his very best, and I am sure that he will be an amazing heart surgeon. But it is still utterly terrifying to have to put that trust in someone who has not operated on my daughter’s heart before.
And then I remember. I remember those early days following diagnosis and the fear. I remember a moment of utter despair, a couple who sat in a hospital chapel and sobbed because they had been told there was virtually no hope. I remember the one thought that got me through: “God is bigger than this.”
Back then, everybody was new. None of the medical team were completely familiar with Jessica’s heart, everyone who operated in those early days was doing so for the first time. But we had a glimmer of hope, and we had faith, and we knew that God was bigger, that somehow God would help us through this. And even though our medical team may be completely changing, God is still the same – today, tomorrow and forever.
To our amazing consultant and the surgeons that have come and gone – we will always be eternally thankful for you and wish you all the very best for your retirement, or new career. We will miss you being a part of Jessica’s journey.
The next steps on the journey will see us getting to know a new consultant and a new surgeon. They might be completely unknown to us, but Jessica will not be completely unknown to them. No doubt they have already been part of the wider team discussing her care. They have four years of medical history for Jessica to draw upon, four years of heart scan images, four years of hospital notes. They will not be coming to Jessica completely unaware. We will have to build up that sense of trust again, but we know that they will do everything they can for Jessica and we will hold on to that faith that has carried us through this far. God is still bigger than this. We are not facing this journey alone.