Today is the day!
ITS VASCULAR BIRTHMARK AWARENESS DAY
And what a better way to spend it than to share some stories with you lovely people.
First of all, I want to explain what a vascular birthmark is, Most people think this means just one type of birthmark but it’s a range of birthmarks including Port Wine Stains, Lymphatic malformations, Haemangiomas, Angel Kiss, Glomvenous malformations, Venous Malformations and Combined vascular malformations. Not only that but other conditions/ syndromes can be related to vascular birthmarks which include:
• Sturge-Weber syndrome.
• Spinal cord Birthmarks
Before I became involved with the birthmark support group and vascular birthmark organisation, I knew that there was a range of birthmarks that might come with related syndromes but I wasn’t sure of what they were, how they affected people and the amount of people with a birthmark!
About 10 in every 100 babies have a vascular birthmark. This is 10% of babies, and it’s my aim with this blog post to raise some awareness. There are a few places online where we can ask questions to the people that know best, US! All over the world today people will be promoting the acceptance of birthmarks and aiming to raise funds to develop new treatments.
First impressions matter!
I asked a few of my friends and family to tell me their honest first impressions and this had little success. It’s hard to tell someone your honest opinion if you’re afraid of hurting their feelings. So I got inventive and created a page where people can give their honest opinion with anonymity, which was awesome because I got the answers I wanted and people didn’t have to feel guilty. WIN-WIN.
To be honest I wasn’t expecting much of a return but I was shocked. With this website, the more people that said it the bigger the text got and as you can see the biggest phrase is “Proud to be me.” This is amazing! I love the positivity from everyone and I’m so thankful for all of the participation. Looking into my word map there are only a few negative feelings but there are lots of questions. This is my main motivation for this post. Not only is this an issue that is close to my heart but it is an issue that needs educating. A wise woman at the vascular birthmark foundation told me that “EDUCATION IS KEY.” And it’s something I couldn’t agree with more.
Every birthmark has a story and most of you know mine, if not it’s just here. Not to bore you with talking about me, I have many stories to share!
I was born in 84. Not too many options for birthmarks treatments at that time. My parents said DR’s suggested a skin colour “tattoo” of sorts. Thankfully my parents said no thanks. I was a happy kid, still am. Resilient, I knew people stared at me asked my parents questions, but I never paid any attention. It’s easy when the questions aren’t asked directly to you. I started laser surgery in 3rd grade. Every 3 months we drove to the Cleveland clinic in Ohio, 2 hours away for us. I remember my parents spending a lot of time on the phone with their insurance trying to get them to cover the treatments because it was not cosmetic. I hated the surgeries, with a passion. I had to put this cream on my face that numbed it, but not enough. I was embarrassed to walk through the hospital and sit in the waiting room with this cream and saran wrap. Lol. The laser surgery hurt. Especially close to my eye, lip, under my nose and bridge of my nose. They could never complete my whole face because I would get so upset. Around 5th grade they started giving me anaesthesia before the treatment. During the one treatment I started vomiting under anaesthesia and aspirated. (for our none medical readers, this means when poor Amy was sick, it got caught in her thought and she stopped breathing) The DR’s had to intubate me because I stopped breathing. I remember waking up in a room by myself with my throat hurting terribly. I didn’t go under anaesthesia after that. Back to awake the whole time, and the cream. Newer lasers were coming out that supposedly felt “cooler” and went deeper, which I needed. The lightening of my birthmark wasn’t progressing as they hoped. In high school my DR told me no matter how many laser treatments I had there was a good chance my birthmark would continue to darken again over time. I felt defeated. I felt as I went through everything for nothing. My family was fantastic growing up. No one made me feel different. I had friends at school, but other kids, even my friends made fun of my birthmark at times. I started gaining weight. My first day of high school was nerve wrecking. It helped I had an older brother and sister who stood up and said something if they heard someone say something. I was very self-conscience. My mom took me to a makeup expert who taught me how to cover my birthmark, but to be honest. I always felt strange when I covered it completely. I started swimming on the swim team in high school and was surprisingly good at it. My confidence started building as I started shedding the lbs. Can’t wear makeup when you’re constantly swimming. I didn’t get asked out much, never to a dance. I had a boyfriend at 16, but that didn’t last. Still friends though. The people I grew up with and went to high school with treated me no different. I was actually voted my senior year most outgoing. I still continued with my laser surgeries throughout high school, but only twice a year. After high school I attended a nearby college to study nursing, I always wanted to be a nurse. After 6 months I dropped out of the program. I was too stressed. Working two jobs and swimming for the college along with the nursing program. I quit both my jobs and school and decided to revaluate my life. Did I REALLY want to be a nurse?? So… sounds crazy, but I started working at a bar at 18 years old. It was a crazy time. I feel like during that time I really lost my self-confidence. I was drinking, having a lot of sex with different men. Other drugs, I look back and I have no clue what I was thinking. Christmas eve of 2003 I was introduced to a guy at work by one of my co-workers. We chatted. He came in every night I worked for a week until I gave him my number. We were together for 3 months and I had a laser surgery coming up, so I told him. I have to have laser surgery on my birthmark. Do you want to come with me? His response was…what birthmark? I laughed … And I was like … You’re crazy. The one on my face. He said he never even noticed it and of course he would go. That was my last laser surgery. And we just celebrated 13 years. oh, and I did get my nursing degree. The hardest part isn’t my friends, its strangers. I still get stares. I just ignore them. I like to educate people, especially kids. A lot of times it’s at a store. And I hear the child ask their parents what’s wrong with her face?? My heart sinks when the parent says, I don’t know. Don’t stare. It’s rude. That’s when I politely tell the parent…it’s just a birthmark. I was born with it. The child usually responds with. I have one too! And then tells me where theirs is. I’ve had people tell me I was marked my Christ so he could find me easier. I giggle at that. I’m not a very religious person, more spiritual. I’ve learned through having my own kids and hearing of their troubles with other kids that it doesn’t matter if you have a birthmark or not, they will find something to poke fun at you about. A majority of the time I get positive remarks about my birthmark. I’ve had people tell me how beautiful it is. You wouldn’t believe the amount of people that come up to me saying they recognize me from…
I have a birthmark on my left leg and went through laser treatment as a teenager… I eventually decided to keep it. While many people these days are getting tattoos, dying their hair and altering their appearance to get attention there are simply people in life that were born different and born to be noticed! A birthmark is special and it means that we were born individually unique. Accepting your birthmarks natural beauty and natural skin is accepting you… So why change something that makes you unique? Your birthmark is beautiful… We just need people to realise that natural beauty=real beauty.
I have a port wine stain on my left cheek. I honestly think that it caused more distress for my mum than it ever did for me as a child. She was advised to give me laser surgery when I was young and I had a couple of rounds. A girl she worked with asked her why she was doing this and she felt so guilty. She was told I would be bullied and I never was. It wasn’t until I was 11 or 12 that this started to bother me but this was only in the way girls of this age start to become self-conscious. I booked in for more laser but then after a year decided it wasn’t for me- it was so sore!. One of my friends told me it’s part of who I am and I would look weird without it. That was pretty much when I stopped thinking about it and most of the time forget it is there. I guess I would like to know what life would be like without it but at the age of 30 that would be too strange to look at in the mirror.
My mum was quite the expert at covering up unique me! I grew up ashamed of my face and thought that I wouldn’t be liked because of it. I don’t blame my parents at all, they did what they thought was right at the time. Now I’ve ditched the heavy, thick makeup and its been the best thing I have ever did! I really don’t care what people think. Those that matter, will always see you, not the PWS. Sending love to all my facially disfigured friends. (as much as I hate this word)
My daughter was born under the 0.4% at term when she was born and had a pretty traumatic instrumental delivery. So when she finally came out she looked pretty bashed up. Big forcep cuts and cup marks so I’m not 100% sure when her birthmark looked less like a mark and more like a permanent mark. But we definably knew by the end of the week!
At first it looked cute, like a little pink beauty spot but then it started to grow. At her 8 week check I went armed with not much knowledge but determination! Determination to get a referral but the GP gave me the usual spiel that made me feel like a paranoid mum and I thought to wait it out. But then it got even bigger, redder and closer to her mouth. I regretted not getting the referral because the stares have already started. While I think she is beautiful, I will not put her at a disadvantage when I know people can suck. So I had to make a routine GP appointment and wait 3 weeks for it to come round to get the referral and this time I wasn’t taking no. I know there is a decent derm consultant at barnet hospital, so I’m not too cut up we aren’t going to GOSH. If nothing else I want to make sure it doesn’t grow into her lips. If they keep growing till 5 months and she’s already 11 weeks with only a 4mm margin, there is a good chance it will and then it could ulcerate. To be honest, I feel guilty now that I didn’t push for it when the mark was smaller but you kind of assume the doctors know best. It’s only after joining this group and one on BabyCenter you find out about Timolol and propanol – and those stories can come from people treating smaller and more cosmetic marks lie those on the forehead (I know these are no less important to treat but it makes me question the Gp more when this could affect my babies feeding).So now we are waiting for a date and if I don’t get my way I’d go private.
I wanted to give you my take on living with a visible birthmark.
My birthmark is on my cheek. It’s honestly never been an issue in my life, I still have fingers left to count how many times someone has made a comment to me about it. Most people, especially when I was a kid, are just curious. You tell them and they go “ok” and everybody gets on with their life. I’m not of the opinion that a birthmark makes you special or unique, in fact, I feel people who run around acting like they are special or better than other people because of it are opening themselves up to be bullied, not because of how they look but because of their behaviour (especially in childhood). A birthmark is nothing to be ashamed of, yet is also nothing to be proud of. It’s just a mark. Don’t treat it like any more or any less than what it is. I guess for me and my situation, the birthmark does not impede on my quality of life unless I let it. It does not deform me, it does not change the shape of my face. Growing up, I only ever thought it was an issue when adults acted like it was (doctors, etc.). As an adult I couldn’t care less and I figure if I don’t care about it, no one else should.
My PWS started at the age of 6 months, just a tiny dot and grew fast when I was 11 I was so conscious about it my mum and dad took me to the doctor who referred me to Bedford hospital which was the only hospital who had the latest laser surgery, had at least 16 laser treatments from 11-18 then again at 20. The one at 20 was almost gone! Then what I thought was the last treatment then brought my whole birthmark back! I’ve had freezing treatment and it’s all failed. It is growing and the comments I get are horrific!
My friends tell me I wouldn’t be me without it and only those who have been with me seeing the comments really know what it’s like. I’m lucky in the fact it’s not bigger but I’m so fed up of comments. I’ve lost all my left confidence but to be honest I never had it. I used to be a ballroom dancer and that made me forget and made me feel beautiful and elegant. I need to find me again! Been a long while since I had my dancing shoes on lol Very nasty! I was bullied at school, strangers on an almost daily basis make comments on who I’ve been in a fight with and told on several occasions that it makes me look ugly! Nasty people put a dent in your brain that is hard to remove, I don’t have mirrors in my house for me just my boys. Physiological damage has hit me hard but I have to appreciate I am still living, can breathe, can see, can taste and more.
I had Patrick in April 2005 it was quite a difficult birth the midwife was a trainee left me too long. My sister demanded I be examined and he was there ready to come, in the end I went into shock I couldn’t do skin to skin and when he was shown to me he was facing the other way so I never seen the birthmark a little later. I was given him to hold I seen his birthmark and was told it was a bruise due to the labour then we were discharged after 10hours. I kept expecting this mark to disappear but when midwife came out she said exactly what it was I started blaming myself thinking it was because I’d dyed my hair etc when pregnant, he appeared to be developing as normal even trying to walk at 9month old. At 10 month old our lives changed forever he was in the living room and I was putting shopping away my daughter shouted of me, he was projectile vomiting and staring into space no reaction whatever, we rushed him to emergency doctor in the hospital they sent us straight to resuscitation. They came with portable ventilator and connected him to lots of machines we were told he had a bleed on the brain and needed transferred to RVI at Newcastle but we were also told he only had a 30percent chance of survival and if he lived he would be brain damaged they couldn’t find suitable transport so done a CT scan and video linked it to Newcastle where they came back with instructions what to do and diagnosed him as having sturge weber syndrome after a few hours he started to return to himself but the fight was only just beginning. He then went on to spend 5 week in hospital so he could be monitored and medication given to control the seizures he had started to have and no longer wanted to walk or talk he had no interest in anything so it was decided to give him physio etc. they sent him to a child development unit where he was given a walking frame and still he wouldn’t try to walk I think he was 2 and a half, Before he did with walker. The next 3years were spent in and out of hospital with seizures and us never knowing if this was going to be the end. March 2011. He wasn’t well vomiting everywhere, lying incontinent on sofa, unable to move the left side we got the doctor who diagnosed a ear infection and gave antibiotics when he was no better later we rang again and was told give antibiotics time to work 2 days later he was still the same, so I demanded a different doctor she came took one look and said he’s had a stroke and he was actually lying in an epileptic seizure and had been for 2 days we has parents should have noticed but we took notice of not 1 but 2 doctors that it was ear infection he was rushed to hospital we lived for 4 week he was returning to how he was before but he didn’t know how to eat drink or even go to the toilet plus still unable to walk or move left side it’s took intense physio and encouragement from us after 6 week he took his first steps aided by us it was so heart-breaking seeing my boy reduced to this but every day he then started saying walk in his own way until the day he was able to walk out the ward unaided to come home I’ve never seen a child with such courage in my life and not just saying it because he my son he amazes me the strength he has. He was about from school for 3/4 month which was hard for him we wanted normality but school were frightened so from then he has went from strength to strength he a chatterbox loves football running around he will never be seizure free but thankfully medication controls them. But I will never forget the day he noticed his birthmark he was about 3 year old sat on my bed next to mirror and he said mam I’ve got dirt on my face so I explained it was a birthmark and he was chosen to have it because he was so special and only special children get them like his. 19month ago I was admitted for a routine operation which went wrong I was given 48hours to live and I refused to do anything with physio etc. so my family put his photo at bottom of my bed and he gave me the courage to fight he a total inspiration to many. I used to get angry why my child because he had 1 lot off later treatment and decided he wanted no more.
I could write a book he has learning difficulties and left sided weakness but he was only about 4 and he saved his dad’s life.
Everyone was so thankful for someone to listen to their stories and I’m so grateful that people have granted me this insight into their stories and lives. Building this post was filled with ups and downs and it’s a journey I have just loved taking.
As well as gathering some stories I got some photos of people and their beautiful marks and people who simply wanted to help raise awareness with hearts of any shapes and sizes, just like our marks.
I think I can speak for all of us when I say thank you for taking the time to read a little insight into our lives.
If you have any questions or comments I really look forward to hearing them.
Ps- Want to say a massive thank you to all of those involved. You are truly amazing.