When we got back they told us the operation wasn’t finished yet, but the anaesthetist came out at some stage, he was taking a break, and he told us it was all going fine and that the news was good. He also said, with a smile on his face, that Craig had given him a hard time as his heart had stopped on a number of occasions.
It was a seven-hour op in the end. And then Craig came out. I was devastated. He looked like this cocoon, his little head was heavily bandaged, and he was taken to the intensive care unit. The hospital was such a depressing place to be with all those sick children.
I was relieved though that he was alive and that the op had gone well. So we sat with him there, spending the day with him at the hospital.
I just remember feeling utterly exhausted. Numb and so, so tired. We spent days with him there in ICU and he had all these tubes and machines hooked up to him. I can’t remember too much now when I think back, but I do remember praying. Just praying.
After a number of days they moved Craig to a general ward and the surgeons said I could stay with him at night. I was so tired I couldn’t do it. I regret that now. It was something I should have done as a mother. We were staying in accommodation near the hospital at the time.
Then they started taking off the bandages, unwrapping his head and I remember looking at that wound. It was this huge scar at the back of his head. He looked so little with that huge wound.
Soon after the surgery the surgeon explained to us that his decision not to put in a steel plate, where bone had been removed from the head, was controversial; but on balance this was what he preferred as a steel plate increases the risk of infection.
But there was more bad news. They said something else was wrong with him as his blood pressure was far too high even on admission to the hospital. They couldn’t get his blood pressure down and he had to go for an angiogram. We went from the Red Cross to another hospital in an ambulance. They did the angiogram and discovered he had bilateral renal artery stenosis. Both the arteries to his kidneys had narrowed and Craig’s heart had to pump very hard to get an adequate blood supply to the kidneys.
By that time I just thought, Dear God, we have just been able to get through this brain tumour op. At that time you feel as if your child is the only child in the world with a brain tumour. And we had just got over that and now this. How could this be happening again? I thought.
The doctors we asked did not agree on where it was best to have the surgery done but it seemed as if local surgeons didn’t have that much experience with this very specialised type of procedure. We eventually decided that Craig should have the surgery done at the world-renowned Great Ormond Street Hospital for Sick Children, in London.
I remember on the journey back from the Red Cross we stopped at a garage and I just went on my knees in the bathroom and prayed.
We got home and were all shattered. Craig had to recover and afterwards, when he was a little better, return to school before undertaking the trip to London in March later that year.
Earlier during the brain surgery, doctors had removed a part of Craig’s skull so he wasn’t allowed to do any contact sports and had to be very careful at school. The children weren’t allowed to bump him either so one of the school employees, a woman called Evelyn, was asked to accompany Craig outside the classroom for the first few months. Of course the children picked up on the fact that he was different and teased him.
And then we received yet another blow.
A week before we were scheduled to leave for London I detected a lump in my breast. My mom had died of breast cancer and this setback, in addition to the others, plunged me into a dark, dark hole of depression.
It was a horrifying experience. I completely lost myself. I was trying to claw my way out of it but I couldn’t. They removed the lump and luckily it was benign. But I was finished.
The doctors decided that I was not well enough to accompany Craig and Neville to London. And so Craig had to go with only his father.
I wasn’t there for Craig when he needed me. I will always regret that.
3Neville: The Journey Begins
I RECALL PATSY AND ME finalising accommodation arrangements for the two of us to stay in London while Craig was scheduled to have the first of two operations at the Great Ormond Street (GOS) Hospital for Sick Children.
The idea was that we would stay close to Ormond Street, but this was not to be. Patsy discovered a lump in her breast and the surgeon she consulted felt that surgery should not be delayed in view of her mother having died from what started as breast cancer.
There really was no choice as Patsy was at an emotional low and the risk of her becoming dysfunctional was high, even if she followed Craig and me to London some weeks later. Understandably she was heartbroken and I remember her saying that she was letting Craig down when he needed her most.
Craig and I left for GOS in March 1989 and, fortunately, my parents were only too willing
