I was born on 22nd June 1962 with a port-wine birthmark. All that the Doctors said at Northampton General Hospital, was just to be careful. I got on alright at Hartwell Primary School, and then went on to Roade Secondary School, (now called Elizabeth Woodvill School). One boy, when I was 13-14 years old, was having a go at me about my birthmark, we had a fight, and then afterwards, we have been friends ever since.
I left school, at 16 and went to work in a Butcher’s shop in Northampton, and one of the customers told me about camouflage make up, which they did in Northampton, I went to have a look about it and they showed me how to do it. It was brilliant when done and gave me a lot more confidence in myself when I used to go out with friends.
A few years later, I met Dave, (my Husband) and got a job where he worked and made lots of new friends.
In 1995, we found out that I was pregnant, and for the first time, I didn’t have any headaches. I felt brilliant, and we were both over the moon. We went and had our first scan, and everything looked fine, and I felt so well. A few months later, we went back to the hospital and had our second scan, all was fine, and it was lovely to see the baby moving about.
Just under a week later we went out with some friends, and towards the end of the evening we all decided to order a Chinese takeaway. I went and picked up the phone to order what we all wanted, but something happened, I couldn’t work out how to use the phone (and no, I hadn’t had any alcohol). My friends ordered the Chinese, and we went and picked it up and sat in the car and ate it all. I felt a bit better, but I couldn’t work out what or why this was happening. I was quiet on the way home and started to get a lot of flashing lights moving about in the corner of my eyes, and then flashing in front of me, as though someone/something kept walking in front of me. I didn’t say anything about this to Dave until our friends had dropped us off at our house, and they went home. I could remember getting to the front door, but the next thing I remember was when I woke up the following morning. I felt very confused and didn’t know where I was. Dave called out the Doctor, and when he came out and checked on me, he said that I have got a 24 hour bug. He gave me an injection and told me to stay in bed, and then I fell back to sleep. Later in the day, I woke up and wanted to go to the toilet but I couldn’t walk. I went down on my hands and knees, and went to several rooms before I knew that I had got tot the bathroom, Dave helped me, and then managed to get back in bed and went straight back off to sleep.
The following morning, I was still very confused, I didn’t know where I was, who I was, or what I was doing. Dave called out the Doctor again, and this time it was my own G.P., Doctor Barter. He done a few tests on me, and then said that I have to go into hospital and said that the problem was to do with Sturge-Weber Syndrome, (SWS). He then rang the Northampton Hospital, and explained to them what happened, and then sent an ambulance out for me to take me in. Dave followed in the car, and on arrival, gave the Doctors the letter that Doctor Barter had written, with all the information about me. The Doctors looked at it and then said this is not the problem, it is something else and threw the paperwork to the other side of the table.
They done loads of blood tests, and other tests, and then later in the day put me upstairs on a ward (Compton). I woke up later to see Dave, my Parents, and my sister Angela had come to see me. To me, I felt a little better, still confused, and I thought I was talking to them alright, but I wasn’t, I was talking double-Dutch.
Later that evening, about 8pm, I said goodbye to them all and they went home. Ten minutes later, after they had gone, I had such a pain in my head, I was screaming, it was just as though my head was going to split apart. I can remember the nurses coming in to me, and the rushing down a corridor, but I cant remember anything else until the following morning, and woke up to find Dad, Mum, Dave and Angela sitting around the bed.
They took me down in the hospital to have a lumbar-puncture, I could remember Dad holding my hand, but I can’t remember feeling any pain or what the Doctors/Nurses was doing to me. They done load of other tests for me, but still not getting any answers of what was wrong with me.
The following morning Dave came in to see me, there was no sign of me, or my family around. A Nurse came over and spoke to Dave saying, “I’m afraid she’s gone, and not with us anymore.” Dave sat down stunned, thinking that I had passed away. Another Nurse came in and sat with Dave and told him that I have been moved to another ward. As you can imagine, Dave’s emotions were on a big dipper, as they just couldn’t find out what was wrong with me, as one time they thought I had encephalitis, which is an inflammation of my brain, and I was given some antibiotics. The Doctors did more tests, but were still puzzled about me, because they had given me the maximum amount of drugs that they could give me. On the Sunday, almost a week after I had been admitted, I was having hallucinations, and in my mind I could see things moving across on the ward I was in. I thought that there was somebody at the side of me, but there wasn’t anybody there, then I thought there was fishes swimming in front of me, and when I was trying to talk, it just came out gobbledy-gook, my brain couldn’t string the words together correctly. No-one seemed to have any answers as to what’s wrong with me.
On the Monday in the early evening, the Doctors came with a Priest from the chapel, surgeons with caps and gowns, and asked Dave to sign authority papers. Dave started to read the papers but was informed that there was no time to read it, as your wife has only got 1 hour to live. Dave signed it and I was rushed down to the operating theatre for an emergency caesarean. My blood pressure was sky-high, and I think I had pre-eclampsia. They told Dave that the baby would be stillborn, as I was only 22 weeks pregnant. Dave left and went home, and hadn’t been there long when he got a phone call from the hospital and asked him if he would like to come back to the hospital as his wife has had a baby girl ands she is alive. Dave rushed back to the hospital and saw our daughter, she was lovely, although very small. He was then rushing about, backwards and forwards between the 2 wards to see me in Intensive Care and to see the baby in the incubator. Dave called her Laura, and she was only 535 grams in weight. She was very small, and wired up to pipes and monitors, and on a ventilator. I was in Intensive Care for several days, none of which I can remember, as I was heavily sedated.
A few days later, I was moved out of Intensive Care, and into another ward. My sister came to see me in the morning, but I was very confused. I didn’t know that I have had an operation, let alone that I had a baby. My Parents/Family came in to see me and stayed as long as they were allowed, and they went down to see Laura for a little while. Later in the days, Dave and the Doctors took me down to see Laura. They took her out of the incubator and gave her to us to hold her. She was still connected up to various wires and tubes, but her arms and legs were moving about, To us, she was the most beautiful baby we had ever seen. We stayed with Laura for a while, and then we went back to the ward. Later in the evening Dave was called back to the hospital, as Laura’s condition had deteriorated, and sadly, she died a short time later. She had even got a very small amount of dark hair.
I was in hospital for a few more days, and the Doctors told me and my family not to have sugar in my drinks or food, but no other information or leaflets given to me about what to eat/not to eat. I wanted to go home, but the Doctors said that I wasn’t stable enough to go home, but in the end they let me go. I can remember getting in the car with Dave, but when I got home I didn’t know where I was, the house I went into wasn’t mine. I didn’t know who the people was who was with me, even though they were my husband and family. The following morning I had pains in my leg, we contacted the local Doctor and he came out and checked me, and sent me back to hospital. I had developed a blood clot after my operation and had to take Warfarin tablets to keep my blood thin. I stayed in the hospital for another 2 weeks, during which time I was still very confused and talking double-Dutch, and writing things all back to front. I knew what I wanted to say, but somehow the signals got muddled up and came out wrong.
I was sent home again, although I wasn’t very good. I had to have someone with me most of the time, during the days. I kept having small epilepsy fits and seizures, they didn’t last very long, but was very upsetting for my family. I was also losing quite a lot of weight.
We had a small funeral for Laura about one month later, and said goodbye to her. That evening I started to have some funny feelings again, lots of bright lights about, and seeing things moving about again. Called my Doctor out again, and they sent me back to the hospital. I had some more blood tests done, and found that my blood pressure had gone sky-high, and my sugar levels were also sky-high, around and over 33mb although no-one had said anymore about my diet or medication about this. They done more tests, and a few days later they sent me up to John Radcliffe Hospital at Oxford (the old one).
I had only been in hospital for a few minutes, when a Doctor Davis came in to see me, and asked me loads of questions, and for the first time, I burst into tears. When I finally stopped crying, I saw that Dave, and Mum and Dad were there. Doctor Davis sat down with us all, and said that my problem was to do with Sturge-Weber Syndrome (SWS) and explained what had happened and that the veins in my head were very tight and not letting the oxygen/blood not getting through properly. This is what my own Doctor – Doctor Bater had said in the first place.
I was in hospital for 3 weeks, and in which time, they done several brain scans, monitored my brain for 24 hours, and loads of other tests. Dave, Mum and Dad, and my sister Angela were with me all the way, even though Mum was physically disabled, and Dad had to get her up, washed and dressed in the mornings, and the same at nights; they came to see me every day. They were there about 10am and did not leave until evenings. They were all fantastic. In the beginning of the third week, they told me that I was diabetic and instantly had to learn how to do the insulin injections, which I done 3 times a day. It was hard to learn about it, as I was till very confused. I still couldn’t walk very well, and they said that I might end up in a wheelchair and that I need lots of help when I get home. When I finally got back home, Dave had quite a few weeks off work to help at home learning all about how to do the insulin injections. He helped me to get up in the mornings, done all the cooking/housework, shopping for me, as I didn’t know how to do it.
When Dave finally went back to work, I would spend most of my days down at Mum and Dad’s house, as they only lived about 100-200 yards from our house. I still couldn’t talk very well, my memory was not good, and I couldn’t remember names, places or people who spoke to me. Often Dave, Mum and Dad had to try and guess what I was trying to say to them. It was very frustrating, although it was funny at times, as we were at cross purposes trying to interpret what I meant, but we usually got there in the end.
One day I decided to go for a walk to the shops, but Mum and Dad would not let me do it. Dad eventually gave in, and took me to the shop by car, and let me walk home. It would normally take me about 8 minutes to walk back home, but on this day it took me 57 minutes, but I did it.
Over the coming months I gradually rebuilt my strength, I also had to go back to Northampton Hospital several times a week to go and have speech therapy to help me talk again, and to relearn how to read and write again. O finally got back to work after 11 months off and was only allowed to work in the mornings. Then finally went back full time 5 months later.
I think back now and know that it was the help and support from my Husband, my family, friends, workmates, Doctors and hospitals, and my own determination, that I have finally got back to where I am now.
It wasn’t until several years later that Angela (my sister) was looking at the computer and found out a lot about the Sturge-Weber Foundation (SWF) and that there was a SWF weekend in a few weeks’ time. Me and Dave went out for the weekend and could not believe what some of these children and parents have gone through. What Dave and I have gone through with our problems, its nothing compared to what they have to go through. In a way I feel lucky.
We now meet up everybody every 12-18 months, and have a good get together on the Saturday night, it is lovely just to talk to and meet new families, talking about what they have gone through.
The following morning we all have breakfast, then most of the children go out for the day (with professional carers) either Cadburys World, or to a Zoo, and those who don’t go out they have professional people to look after them. During the day we have several Doctors come and give us talks all about Epilepsy, Glaucoma, Fits, seizures. Doctors from Great Ormond Street talking about laser treatment, how it works and good results, and other Doctors. It was really good.
Afterwards I went and had a talk with the Doctors and explained what happened with my birthmark. They told me to get in touch with my own Doctor, which I did so with Doctor Barter, and he said he will send a letter to a few Doctors at different hospitals who do the laser treatment. They took some photos of my birthmark and put them in with the letters.
About 12 months later I had a letter from Churchill Hospital at Oxford, to go and have some laser tests done, to see if the laser treatment would work. I spoke to another Doctor and he done 3 laser tests on my birthmark. 3 months later I went back to see him, to see what he thought of the tests. He had a look at the results of the tests for the laser treatment and was very pleased with the results, and that he will send me an appointment, to let me know when I can start with the treatment.
The first time I went, it hurt, and didn’t realise how bruised it would be, but after a few days, the bruises started to go down. I made sure to put plenty of cream on it so that the skin didn’t dry or split. After about 8 weeks later, I could see that the colour of my birthmark had started to get lighter, and by the time I went back for the next appointment, the colour of my birthmark had really changed. When the Nurse had a look at it, she was really pleased with the results, and told me that she was going to carry on with the laser treatment until it was all gone.
Several years later, the laser treatment has done a brilliant job, and I think that it will only need 4-6 treatments and it will all be gone. I have taken photos on each treatment, and again before I go back for the next laser treatment. You can really see what a difference it has made.
The next time I went for laser treatment, the machine was not working properly and would not get to the strength that was needed, but they done the laser treatment beings that I was there, which I thought was very kind of them. The next time I went, it couldn’t work and said that they don’t’ think it can be repaired. They said that they are going to get in touch with another hospital in Oxford.
They got in touch with Stratum Clinics Ltd., and later made me an appointment to go and get some more tests done. The done some more photos and waited to see if they can go ahead with the laser treatment. Then about 18 months later, I had an appointment come through, and went and had some more tests, and was very pleased with the results. Then I had a phone call from Stratum Clinics Ltd., and told me that everything was good, and on the 24th April I went and started again with the laser treatment. The machine is a lot stronger than the other one, and was pleased with the treatment and was pleased with the treatment they were giving me. They were lovely people and very supportive and care about what they do, brilliant. They have made me 6 appointments, so hopefully it will soon all be gone.
It has given me so much more confident with myself, before I hated people looking at me and making jokes at me. I never used to say anything, and used to walk away from them, because it upset me all the while. But now if people look at me, I don’t turn away, and if the ask questions about it, then I will answer them and talk about what happened to me. I don’t want anybody to go through what we went through.
If I hadn’t been pregnant, we would never have learned about Sturge-Weber Syndrome, or the Sturge-Weber Foundation.
I would like to say an enormous “Thank You” for Jenny and everyone who are involved with Sturge Weber UK. If it wasn’t for Jenny, and her involvement/dedication there would be so many people struggling with their daily lives, coping with families’ predicaments, and has been an inspiration to me, and many others alike, without which, I, and others with Sturge Weber Syndrome would not be where they are now. I would also like to say “Thank You” to Northampton General Hospital, John Radcliffe Hospital at Oxford, (the old one), Churchill Hospital Oxford and Stratum Clinics Ltd., at Oxford. Try to enjoy life while you can, they have certainly got me back to enjoy my life.
Thank you – Linda Andrews
