My amazing son, who I'll call J, is four, and was diagnosed soon after birth with a relatively rare genetic condition. We don't yet know how it will affect him as he grows older, but so far he has battled an array of medical problems. One thing's for sure, our little family's life will never be 'normal'...
This week, we got the call from Great Ormond Street. 'J's operation is penciled in for six weeks' time.'
We have been expecting this. We found out last summer that J needs to have heart surgery before starting school (so as not to disrupt his education, and also because this operation is best done young). That in itself was manageable, but what is more difficult is that it has to be open heart surgery.
Initially the cardiologists hoped to use less invasive keyhole surgery to repair the defect in J's heart, but his last echocardiogram scan showed that this is not advisable due to the structure of his defect. This leaves open heart surgery – cutting open the chest and a far bigger operation – as the only option.
J has had this defect since birth (alongside a couple of other heart problems which have since resolved) but it has never caused any symptoms so far – he has no shortness of breath or lack of energy, only goes a bit blue when cold. This is an operation to prevent him developing problems later in his life. You have to wait until your child has a certain weight to be able to do this operation, and so here we are today.
I've been busy arranging a course of specialist play and psychological therapy for J to prepare him. Having had four surgeries so far (one in the womb and three under general anaesthetic) and having spent far more than his fair share of time in hospital, he has a great and understandable anxiety about doctors, nurses, clinics and so on.
His last operation last summer – a very minor one – was so upsetting for him that we aren't quite sure how to face this next far bigger one. We won't be telling J about it until a few days before – as per the current guidelines – but we are doing all we can to help him understand that hospitals and doctors and examinations aren't terrible.
The good news is that although open heart surgery is a huge thing to go through, from J's doctors' point of view this is not a complicated, unusual or especially serious operation. He should have a week or even less in hospital and three or four weeks off nursery recovering. It won't fail and then this will be J's final surgery, as far as we know.
Another thing that's comforting is to think about all the family and friends who I know will be there for us. It can lift one so much in hospital to have a friend visit, coming in all cheerful and energetic and smelling of the outside world.
But to us, his parents, I confess, this is tough. I'm dreading the days beforehand, and that dreadful morning in hospital waiting to be called for surgery when J can't eat and will no doubt understand something is up.
I'm dreading the list of possible (though highly unlikely) risks read out to us that morning and the stark scribble in the doctor's hand of what they are going to do, under my son's name, which I have to consent to and sign.
I'm dreading the fact J, so happy and innocent, still doesn't understand what surgery is or why he needs it. I'm dreading the moment when he gets his anaesthetic – he has fought this the last two times.
I'm dreading the surgeon cutting his chest open, putting him on a heart bypass machine, stopping his heart and fixing the defect, then restarting his heart.
I'm dreading going to see him afterwards and I'm dreading intensive care and the ventilator and I'm dreading perhaps above all the moment when he wakes up in pain thinking 'where am I?'
And then I'm dreading the long days and nights of round the clock care and inevitable (hopefully only minor) complications to follow.
I'm dreading having to be strong for him because I'm the person he needs the most.
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