Hi Everyone! My name is Grace and I am 21 years old, I grew up with a hemangioma that started to grow hours after I was born. I thought it may be helpful to share my story as a child who grew up with a large hemangioma and ended up having no treatment.
I feel like I should start right at the beginning, Exeter hospital, England, 19th of August 1999. I had just been born via planned C section and the doctors had started to pick up on a few health concerns. For that reason, I was taken to Bristol Children’s Hospital, which is in the South West of England. When I got there I was being closely monitored and my mum started to notice bruising coming up on my hand. This bruising was then turning red and travelling up my arm.
My mum called the nurses in and demanded to know what was happening to me. The doctors were quite concerned but couldn’t give her an answer. I’m sure you can understand this was a scary experience, I had multiple problems they were examining me for and another one had arisen. At first, she thought I had been injected with something that I had reacted badly to, but the doctors went back through the notes and could see I’d had no injections. I had been kept in the hospital for a while and was travelling to and from being regularly monitored, but still no one had any idea what was happening to my arm. By week 8 a senior doctor referred me to a dermatologist at the hospital, where even then, they couldn’t give a straightforward answer. They were told it was a hemangioma and my parents were told that my arm would never grow to the size of a normal arm? Is this an experience anyone else has had? I hope you can see from the pictures I have shown now that this was not the case!
The advice my parents were given at the time was in very short supply, and they were essentially told to let it settle by itself and they should start noticing a change in appearance by the time I was 5. If they weren’t happy with the way it was going by the time I was 7, then they would be offered plastic surgery to remove it. I know it seems crazy compared to the medicines/prescriptions they can offer you now. But in all honesty, I am glad they let things go through it’s natural course. I am very lucky that my birthmark wasn’t obstructing any veins, it didn’t cause me any pain and I actually grew really fond of it as I got older!
Most of the time when I show people baby pictures of what my arm looked like, or if I chat to other parents who have children with hemangiomas, they ask if I was ever bullied for it. And my answer is no. Children I went to school with were inquisitive and wanted to know more, but as soon as I told them what it was and why I had it, they actually found it just as cool as me! I also made up little stories saying “it means I’m next in line for the throne” or “It means I’m powered by glitter and fairy dust” and, looking back, I’m glad I was able to have a bit of fun with it. I think the trick to that is that my parents never made a big fuss about my arm, it was just a part of me. I never spoke about all the trouble and trauma my parents went through with it until I was old enough to understand it fully. But while I was growing up it was just my special birthmark.
My biggest piece of advice I could give would be that you must remember your child has never not had that birthmark. For them, it isn’t out of the ordinary or something they should worry about being picked on for. For them, that is their normal. It will only become strange to them if they realise other people are worried about it, or mum and dad are worried about it. That’s definitely how I have always felt, and even more so now, looking back.
My mum would be the first to say that she got more strange looks and comments from other parents than I ever did from children. People would stare at me in the street, which she hated. And they would ask “what’s wrong with her?” “What have you done to her arm?”. Not because they wanted to learn something about a child with a birthmark, but because they wanted to judge. As long as you know that what you’re doing for your family is best, then it really doesn’t matter what other people have to say.
My birthmark did start to go down at age 5, as the doctors predicted. And has pretty much looked the way it does now since I was about 10. It ulcerated once when I was around 6 months.
You can probably tell from the pictures I had a large fold towards the bottom of my wrist, and it ulcerated in there. My mum treated it using gauze and cream and from then on just tried to keep it dry, rather than letting moisture build up in the fold. It has left me with a scar now, but it’s not something that is very noticeable. My arm has gone down considerably, not just in colour but also in size. It has left me with a bit of excess skin, but again, nothing that is bothersome to me.
I know I am really lucky with my birthmark, and as much as I am thankful my parents decided to just let the hemangioma run its course naturally, I understand that may have been different if it was on my face, and it would certainly have been different if it was causing me any discomfort/health problems. Whatever you feel is right for your baby is the thing you should choose. But please don’t think medical treatment is the only thing to help, because the human body is amazing!
I hope a lot of you mummas are able to find some comfort in blogs just like this one Diana has set up, because back in 1999 my mum felt quite isolated and alone, not realizing other parents understood the worry or panic when you first hear about hemangiomas. I would love to chat to any other parents/children who have questions or want to have a personal chat about their story.
– please get in touch via my Instagram @graceemrowe
Thanks so much for letting me share,
Lots of Love
Grace.
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If you also like to share your story, do not hesitate to write to hemangiomamomma@gmail.com. Follow us on instagram hemangioma.momma ❤️🍓
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