Extraordinary Links

Subcutaneous Vascular Malformation and Us

My name is Katie, I’m one of the trustees of Extraordinary Links. I’m a mum to a 7year old girl, and I’ve been asked to share her story, as it may help someone in our community.While trying to have a child, her dad and I went through many miscarriages and much heartache. When we fell pregnant with a little girl, Red, I was a bag of nerves. I went into early labour at 25weeks, but thankfully kept her where she should be until week 38 when she stopped growing. Doctors thought she may only weigh 2-3lbs, and wanted to induce me there and then. It was a difficult labour, that ended in an emergency c section as she had stopped breathing. Obviously, and thankfully, she was ok. Small and jaundice, but ok. So as you can all imagine, we were very anxious parents. When she was 5 weeks old, I noticed a small, blotchy patch on her leg that looked exactly like the telltale meningitis rash, so we rushed up to a and e, where a doctor told us it was just a birthmark. So we went home, happy that it was just that, and went about our lives. That was until it started growing, and spreading. Initially being the size of a 5 pence, it started creeping up and around her leg. I would speak to Doctors, and they would all say the same, its a birthmark, but I wasn’t convinced. However, as I often did overthink things, I trusted the Doctors. 

When she was around two, she got another horrendous nappy rash that required a Doctors visit, so off we popped. By luck, or fate, the Doctor asked what it was, and when I told her, she said that she specialised in birthmarks and that it most definitely wasn’t one. She referred us to the children’s hospital immediately, and that day she had so many tests performed on her, she looked like a pincushion. The doctors were baffled, they tested her for cancer, liver problems and kidney failure. All of this came to nothing, and we were passed from Doctor to Doctor, who all agreed it was “something ” but didn’t know what that something was. That is until, we met her final specialist, who knew straight away.  It is actually a Subcutaneous Vascular Malformation. This is where either her veins are in the wrong place or she has extra ones. We are awaiting an MRI, but Mr Covid has intervened. It essentially causes her leg to grow faster than normal, it is currently 1cm longer than her left leg, and roughly 1cm wider.

They’re completely unsure of how much it will spread as it is so rare, but at the moment, it covers her whole leg, right bum cheek, and is halfway up her back and tummy. We have regular appointments with vascular, orthopaedic and dermatology specialists, and they have said that they could remove it if she so wishes, but it will be risky as they will need to put her to sleep at least 7 times, at its current rate. We have to be careful with her getting hurt as she bruises really easily and a cut to her leg would be extremely dangerous.  Ascetics and mental health-wise, we are very vocal about how beautiful she is and we call it her tattoo leg, and she’s already comfortable explaining it to her friend’s and gets a giggle when adults *mainly GP’S * that see it for the first time and panic. But whatever she decides, we will continue to support her.
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