She can’t recall the trigger but says that one day she just felt it was time for her and Neville to start a family. “I just suddenly thought that I would like to have children and Neville agreed,” she recalls.
But falling pregnant didn’t prove easy and only after several fertility treatments, Patsy and Neville were finally expecting their first child.
After nine years in Johannesburg, Neville was offered a job in Port Elizabeth and the couple returned to their hometown in October 1980.
At 6:10pm on December 9, two months later, on a summer’s evening, their only son, Craig Carstens Schonegevel, was born at Sanford Maternity Home in Port Elizabeth.
2Patsy: Life with Craig
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
