The Last Right Read online

  This woman made me very afraid of what could happen. She told me about how disfigured people could become and that this Elephant Man had been put on show, like some kind of freak, for people to look at.

  Perhaps the conversation was good because it opened my eyes to what could go wrong. I was still thinking at that time that Craig would be fine.

  I went home that night and told Neville but we decided to move on, to get on with it, to be positive about Craig’s health.

  Craig had his second surgery when he was four and this was when his tonsils and adenoids were removed without any complications.

  Then I noticed that he was developing more and more of these brown marks. We were referred to a professor of dermatology at the Groote Schuur academic hospital in Cape Town where they did a biopsy on the marks. I remember Craig screaming when they did it.

  Craig developed a huge café au lait mark on his neck and then I noticed this lump on the left front of his head that just seemed to be getting bigger. I was petrified. We went to a general surgeon who told us that he would not personally remove what we thought was a plexi-fibroma engrained in the scalp. He felt the surgery was more suited to the work of a plastic surgeon should it become necessary. I started to get very concerned, wondering where this would all be going if that lump kept on growing. And then it started to become real to me that Craig was not a normal child and that things could go terribly wrong.

  And then they did.

  Craig would often complain that his head was sore. I used to put a wet cloth on his forehead and give him a painkiller. On these occasions, I’d put him down and he would suddenly projectile vomit. He’d want to lie down in his bedroom with the curtains drawn. He was clearly sensitive to light. I thought at the time: “This can’t be right, there must be something wrong.”

  Craig was attending a pre-primary school in Sunridge Park at that stage. He was never really happy going there on his own but we had to do it.

  One day the principal called us and said that Craig was not reaching the developmental milestones and that we should have him tested. We were later advised to enrol him at Cape Recife School, which catered for children with normal intelligence but with special needs.

  Craig’s speech was very nasal, and the kids used to tease him about it. Our first visit to the Red Cross Children’s Hospital in Cape Town was to have his nasal speech examined and although a plastic surgeon spoke about likely surgery, more serious medical problems overtook this impediment, which was to receive no further attention.

  We spoke to a general practitioner about Craig’s health who told us that he thought Craig was just “performing” because he didn’t want to go to school. But I instinctively knew something was very wrong.

  Then one morning Craig said that his bedroom light was spinning and later in the day the school called to say that Craig had developed a squint and that I should come and fetch him and take him to a doctor as soon as possible. There was a new paediatrician, Dr John Wickens, in Port Elizabeth who we had already been referred to but not yet seen. Neville was away on business in Johannesburg at the time and the next morning the three of us saw Dr Wickens.

  Dr Wickens must have spent two hours examining Craig. He asked him to walk on a straight line but he couldn’t. He phoned a professor at the Red Cross Hospital in Cape Town and told us that we had to get ready to go there immediately.

  I can remember leaving the building with Craig and feeling utterly terrified.

  And that was when it started.

  They did this scan at the hospital and I can remember someone coming out and asking Neville if Craig ever had a discharge from his ear. I remember thinking that something was seriously wrong here. Then someone else came out and told us that they found a brain tumour, a cerebellar astrocytoma, and that it would have to be removed.

  It explained a lot of things to me: the headaches, the sensitivity to light, the projectile vomiting. But I just couldn’t think then when they told me that they would have to remove it. I knew that they would have to cut into my son’s head. We had to wait a while before the operation and Neville’s mom flew up from PE to be with us but had to return the next day. I just felt my whole world shattering.

  Neville has always been good with this sort of thing, very practical, and he talked to Craig. Explained to him that there was something in his head that needed to be taken out. Craig just accepted it.

  I tried not to show how frightened I was. I had to be strong for him. Craig was allowed to spend a day in Cape Town and we took him to a few places, like the World of Birds in Hout Bay, before he was admitted. But he didn’t enjoy it. He was too sick.

  We saw the neurosurgeon and he told us that he was going to operate, that it would be a delicate procedure and that it was not without substantial risk. If things went really wrong, Craig could even be paralysed or worse. I just remember saying to him, “I don’t care if Craig is paralysed or whatever, just see to it that he comes out alive because he is our only child.” You see, I had my tubes tied some time after we were advised by a geneticist that it was best for us to have no more children. Either one of us carried the gene responsible for NF1 or it was a mutation but there was no certainty.

  The surgeons reassured us that they would do their best. It was emotionally excruciating for me when we had to leave Craig at the hospital. He had never been separated from us. And when they had to take him through to surgery, Neville had to go with him. I just couldn’t do it.

  They told us it was going to be a very long operation. I was an emotional wreck. They told us not to wait at the hospital. We went away, had coffee and then came back again after about four or five hours. And then we went back in and waited outside the theatre. Your mind just races, you know. It was very good to have Neville there. He was very much a part of it.

  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 tum
our 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.

  3

  Neville: 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 to leave their home in Humansdorp and stay with Patsy.

  Virtually overnight Craig’s world and my world changed drastically. Craig had a life-threatening complication and was separated from his mother with whom he had the closest of relationships.

  I was temporarily separated from my wife, my work and other important relationships. I think Craig, as an eight-year-old, was entering a situation that would unsettle most adults and I felt an increased degree of responsibility, love and empathy for him.

  I became his security and a father in a way that neither of us had experienced; so much so that on our way to London he told me how much nicer I was than I had previously been.

  In hospital Craig had his own room in a section for foreign children and a curtain separated his room from mine. My life became totally focused on his life and parents were encouraged to become involved in the care of their children.

  I made his breakfast, read him stories, entered the shower with him to ensure that he did not fall, removed the odd catheter and was at his side whenever there were medical procedures involved.

  I would inform him of whatever was going to be done to him, including many invasive procedures. I was determined not to mislead him. He trusted me and I admired his courage and exemplary behaviour. He related well to the doctors and other medical personnel and would, to their surprise, usually ask them how they were.

  We had been advised to take Craig to GOS on account of the complexity of his condition – bilateral renal artery stenosis – the narrowing of both the renal arteries.

  Relief for the left kidney was regarded as more likely to succeed if renal-artery reconstruction in the form of a splenorenal anastomosis was performed by a surgeon from St Mary’s, who had coincidentally grown up in what was then Rhodesia and done his medical studies in South Africa.

  The surgery lasted approximately eight hours. It entailed severing the artery to the spleen and joining it to the renal artery at a point beyond the narrowing on the side closest to the kidney.

  Craig recovered well and four weeks later we were on our way home to an emotional family welcome. However, before we left England, I decided to explain to Craig that we would have to return as he needed to have yet another operation.

  He took this news surprisingly well but did ask for assurance that it would be the last operation he had to undergo. Again, I chose the option of conveying the facts to him, even if it was in a slightly diluted form.

  When Craig and I left for GOS again in June 1989, I knew that the reconstruction of the artery to the right kidney was going to be extremely difficult as the narrowing was up against the aorta of the heart.

  By this time Craig and I had got to know the surgeon well and he had developed a real interest in Craig. He frequently told me how he admired Craig and how exceptionally positive he found him.

  The required surgery was known as an aortorenal vein graft, which meant that the saphenous vein had to be removed from one of Craig’s legs and used as a replacement for the malfunctioning renal artery.

  As best I can remember, this surgery lasted approximately 12 hours and proved to be extremely challenging for the medical team.

  I chose not to have anyone with me while I waited for Craig to return from theatre and spent much of the time walking the streets close to the hospital. My link to Patsy and the family in South Africa was by way of a public telephone and I can well imagine the enormous strain they were under during this marathon surgery.

  Soon after Craig returned to his ward, I was told that it had been an extremely difficult graft to perform. However, there was realistic hope for success even if the probability was not high. My solace came from the belief that Patsy and I were doing our very best for Craig, and so were the medical team. I also believed that fortune and luck, if you wish, would at some point favour our eight-year-old.

  After some days of considerable pain, Craig started complaining, which was unusual for him, and finally I was told that the operation had failed. I do not recollect how I addressed this with him but I do have a vague recollection of telling Craig that one of his kidneys had to be removed and that this meant another operation, but that it would be fairly quick and not nearly as painful.

  I would imagine that my credibility was at risk but I do think that the surgeon and I succeeded in getting him to believe that he would get better if the kidney was removed. He was also told that it was not vital to have two kidneys.

  The removal of Craig’s right kidney required a fairly straightforward procedure known as a nephrectomy and this signalled his imminent release from GOS and ultimately a visit to Hamleys, the renowned toyshop. Before returning home we spent a few days with caring family in Marlow as this provided an opportunity for final monitoring and rapid access to GOS in case of emergency.

  Leaving Heathrow airport meant the end of an intense and challenging experience for Craig and myself. I gained even more respect and admiration for him and I think he developed the belief that he could trust me and rely on me.

  4

  Ethel: The Drawer under the Bed

  Ethel Schonegevel, Neville’s mother, was 84 years old when her grandson ended his life in 2009.

  She is deeply religious and works tirelessly doing pastoral care for the Methodist Chur
ch in the small, picturesque farming town of Humansdorp in the Eastern Cape, about an hour’s drive from Port Elizabeth.

  YOU KNOW, PATSY IS LIKE A DAUGHTER TO ME. I have loved her from the beginning. It doesn’t happen that often that a mother and daughter-in-law get on the way we do.

  Soon after they had got back from honeymoon this telegram arrived saying that Patsy’s mother was dying. That drew us very close together because after her mother died I became her mother.

  I have been with Patsy and Neville on this journey of Craig’s life. And oh what a beautiful little child he was! You would not have thought there was anything wrong with him. But we were over the moon at having this little boy in our family.

  When Neville and Patsy used to go away or take a break in Cape Town they would leave him with me. He loved it because in a way I was his second mother. Craig was never a good sleeper. He used to wake up quite a bit.

  Then he started to grow up and he was very woelig, which is such a lovely Afrikaans word for “busy” I suppose. We used to play Snakes and Ladders together, Ludo and card games. We cooked and we baked but I used to find that as soon as we start cooking then it was too slow for him, he wanted to get on to the next thing.

  We built sand castles and we fished in little pools. Patsy went back to teaching at one point and he had a little bicycle. They were living in PE and it was quite a big house in Weybridge Park, with a slope on the driveway down to the road.

  It was quite a busy road. Now Craig was determined that he was going to learn to ride that bicycle. But he can’t ride alone. I must push him and push him and push him and then I try and let go but he won’t let me yet.

  Eventually I decided it was my mission to teach this child how to ride on his bicycle. I knew it would mean so much to him.

  As you know, little boys have no fear and he laughs and he says, “Let go, let go” and he is just about falling and eventually I just let go for a little while and it was magic, he went on his own. It was a wonderful feeling.