Hi, my name is Barry, father of Shelley.
Shelley is a twin. She and her brother Mark were born on the 30th June 1974 at the Queen Victoria Hospital, South Africa.
Although it is 35 years ago, I vividly remember my wife Marion and myself driving down to the Hospital at 5.30am on a Sunday morning with me telling her “I’ll be taking you home you know! It’s only stomach ache you’ve got!” (because she had been eating fruit the night before). It is a good job I’m not in the medical profession because Mark and Shelley were born only a couple of hours after our arrival about 7.30am. They were 5 weeks premature – Shelley only 2lb 12oz and Mark slightly bigger 4lb oz and they were put straight in incubators. Being so early I was still trying to find a cup of coffee when they were born so hadn’t a clue that it had happened! I remember the ward sister grabbing me and asking if I had seen the babies my answer being “what babies!?!” She also told me that before I go home the doctors wanted to speak to me. When I saw one of the doctors, he asked if I had seen them (obviously “No”!) he then told me the reason why he wanted to see me was because the little girl had been born with a large mark on her back which they were not sure what it was but they would have a better idea later in the day after some tests. On returning in the afternoon, they explained that at first they were worried that the mark on Shelley’s back might be Spina Bifida but the good news was that it wasn’t and that it was a large birthmark with other various marks (now I believe called Satellites and the condition is called CMN).
The doctor then told me they wanted to keep an eye on it. As Shelley got bigger they recommended removal as soon as possible.
Anyway first things first! Mark, the biggest was home in 3 weeks, but Shelley was kept in an incubator for 2 1/2 months until she got to the 5lbs mark – they said she had to be before she could come home and because she was quite a sickly baby they felt even sure about their decision.
Over the next few months I remember we took her back to the hospital numerous times before she had her first operation which was when she was only 9 months old! Poor child! – and I suppose to a much lesser extent poor parents! I cannot count or remember how many operations Shelley had over the following years but I do recall her last major operation in South Africa was when she was 15/16 years old. She has had more operations since being in the UK and has to see a dermatologist every six months for check ups. I believe they take photos of her every so often for confirmation of change and if any new-found moles appear.
Shelley was and is a very brave girl. Memories, and I suppose some nightmares come to mind of her many stays in hospital sometimes even over Christmas and summer holidays (her stays in hospital were sometimes days and sometimes months) but after many down times she and ourselves just got on with it.
I remember twice going to see her after an operation finding the bed she should have been in empty and being told she was in Intensive Care being a very sick girl and much later being told both times we nearly lost her! Shelley received her hospital medical records several years ago from the hospital she was treated at (Johannesburg General) and subsequently found out it was due to anaesthetic reaction problems and not because of her birthmarks that she took those sudden turns for the worse.
I also remember Shelley, as a toddler rubbing her back against anything hard with a corner (including brick walls!) even drawing blood just to get some relief from the itching. Many times we were being woken up during the night with her crying because she was in such discomfort in her cot not being able to scratch her back – I rubbed it for a while to ease it then myself trying to get back to sleep for work the next morning. We made it priority that every morning and every night we would lather her back in cream in order to relieve some of the painful itch. And, as parents, we insist and ask if she still does!
I think of the times when dressing the wounds – sometimes they were infected not only the places where they had taken the birthmark off but from where they shaved the skin (skin grafts) from to do the plastic surgery – these sometimes took weeks to heal. Shelley after surgery was always in terrific pain because of the wounds but she was a little hard nut who fought through it (despite always being a petite little thing).
She had quite a few different surgeons who did the operations and everyone commented what a brave girl she was. She had been in and out of the hospital that many times that later on taking her in it was like a “Welcome Home Shelley!” from regular doctors, nurses and even the cleaning staff. Everybody knew Shelley and some of the cleaners use to tell her “this is Shelley’s hospital” which always put a smile on her face – she bonded with so many staff!
We have often discussed if we were wrong making Shelley have the operations, putting her through all the pain that went with them and missing a big chunk of her childhood but remember in those days, right or wrong, most doctors said birthmarks should be removed due to the risk of getting malignant melanoma. Shelley now says at 35 she is pleased it was done especially the large one on her back.
We were lucky with Shelley that she was a type of kid that sailed through life nothing seemed to phase her. At her schools her mates and the other pupils never seemed to see or bother about her birthmarks because it didn’t matter what was going on – Shelley was Shelley!
Shelley never bothered about wearing a swimming costume or the like for PT and I never remember her coming home telling us that someone from school or outside had said something to upset her. In fact looking back she loved school and school loved her because she was a top grade student and got top grade in the subjects she took.
Maybe we were lucky living abroad in the 1970/80s, we had the beautiful weather and Shelley knew no different wearing shorts etc. I can remember once or twice getting my back up with people staring but to be honest even on the beach, it was not really a regular occurrence – it is human nature for people to look! BUT maybe again it was Shelley not being self conscious about the marks from the operations and her smaller birthmarks, which won the day! I am aware that when Shelley developed into adulthood she might have become a bit more aware and conscious of her scars but she says she would rather deal with those scars than the birthmark.
I hope my story helps other parents who perhaps have not long started this journey but I can only give you my reassurance that “things are not that bad” – whether you make the decision for your child to keep the birthmark or have it removed – the fact is, regardless it will be an upsetting episode at times but more often than not, we are all the same and life is life with or without the CMN! Just ask Shelley! She has always worked hard, has plenty of friends and is happily married with a child of her own.
Times have moved on and you and your child have more information and certainly more support from the medical profession and groups like Caring Matters Now – making it, I hope, that little bit easier!