I LOVED MY SON the minute the nurses put him on my chest. Neville was there with me when he was delivered. And then they took Craig away and I just lay there. They seemed to have forgotten me and then someone, a nurse, I think, came along and said, “Are you still here?”
I remember that during labour I bit someone on the arm; I don’t think it was Neville! It was incredibly painful.
Afterwards I went home to the house we were renting because we had just got back to Port Elizabeth. I didn’t really have friends, so it was a quite a lonely existence for me.
My mom had died but luckily I was very close to Neville’s mom, Ethel, and she was a great help in the beginning and it was good to have her nearby. After we bought our own home in Weybridge Park things settled down.
From the start, Craig was a very colicky baby. He didn’t breastfeed easily and he just didn’t sleep through. Sometimes he would wake up 21 times during the night. We actually counted once.
But I had this amazing link with Craig and I would find myself waking up a few minutes before he would. It was as if I could sense it.
By then, I had given up teaching and was being a mother at home. Neville and I realised we weren’t going to survive not sleeping, so we moved Craig into our bedroom. Of course it was quite a thing moving him out later, but that’s another story.
Shortly after he was born I noticed that he had this brown mark on his thigh but I didn’t think anything of it. His ear was a bit funny and I used to run my finger along it. Then about a year later the paediatrician noticed that more brown spots had developed and sent us to a skin specialist.
The specialist mentioned something about this condition that I couldn’t even pronounce. He said the spots were known as café au lait spots because of their coffee-with-milk colour and that they were associated with this disease, Neurofibromatosis. Later, Neville and I went to see him again and he showed us photographs of people with this disease.
He didn’t want to show us all of the photos. But he did tell us that it was impossible to predict what would happen and that you could have it without anything going wrong. On the other hand, it could manifest with serious or life-threatening problems.
Craig had his first operation in 1982 when the paediatrician noticed that his testicles hadn’t descended. The only signs were the marks on his body.
I decided to be positive about it and to trust that he would be okay. Once Craig had been diagnosed with NF1 we looked for support groups but there were none in South Africa. We eventually did find an organisation in England called Link (Let’s Improve Neurofibromatosis Knowledge) and we began to read up more and more about the disease.
As Craig began to grow he seemed to be reaching all the milestones. I played educational games with him until they came out of my ears. He was a busy little boy, but one thing worried me – he didn’t crawl properly. He would sit and then pull himself up on a chair, holding on until he eventually learned to walk unassisted at about 12 months. I was concerned because I had read all the books on child development and crawling was an important developmental milestone.
Eventually we took Craig to a little playschool when he was about three. He was very attached to me and didn’t like being there but he was an only child and he needed to socialise. I’d leave him there, my heart breaking, and then they’d call a little later to say he wouldn’t stop crying so I’d go and fetch him.
Then one day we were at a children’s birthday party and I was talking to one of the other mothers while the children were running around. We were discussing Craig’s brown marks and I told her that he had something called Neurofibromatosis, which at that time people used to mistakenly call the Elephant Man’s disease. For many years medical science had incorrectly believed that Joseph Merrick, the Elephant Man, who was born in 1862 and also died at the age of 28, had suffered from Neurofibromatosis. Recently there has been renewed controversy about what he died from.
Well, the woman was completely shocked and asked me if I had seen the movie about Joseph Merrick who was known as the Elephant Man. I hadn’t. Later I did see the movie and still remember her comments at the party to this day, as well as where I was standing and what the house looked like.
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 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.