Walking the corridors of Great Ormond Street Hospital is a humbling experience. Your healthy child will never feel more precious than when you have seen what other children have to suffer
I have visited the specialised children’s hospital in Central London many times since my eldest child was born. She failed all her post-natal tests, was floppy, couldn’t focus her eyes and didn’t respond to sound. Suddenly the birthmarks which cover about twenty percent of her upper body became the focus of huge concern. We’d thought that the irregular colour of her skin was simply a cosmetic issue until Paediatricians told us she may also have birthmarks on her brain.
After her birth, when the vernix was wiped from her body, there was a mottled, pink and purple stain covering most of her right arm and hand, in a V-shape on her chest, her lower face, bottom lip, down her forehead and on her neck and upper back. At no point did we imagine that these anomalies could also exist inside her body.
My little girl has every single type of birthmark except the one that goes away.
I was sick with fear as she was booked in for a general anesthetic and brain scan at ten months old. The wait for results was agony. Mercifully, the MRI showed that she does not have birthmarks on her brain — the relief that she was just a slow developer is still tangible to me. In the intervening 14 years, we watched as her quirks and idiosyncrasies grew, grateful that they are down to her unique personality, not malformed or overgrown blood vessels.
What makes my amazing daughter different to most insecure teenagers is her attitude to life, and her positive outlook is the reason we don’t visit Great Ormond Street anymore.
As mothers, we all worry endlessly about our children’s self-esteem. Social media makes it even harder to exist with any perceived imperfection.
‘What’s that?’ my tiny daughter would sometimes ask, looking at her arm. Her birthmarks become much darker if she is ill, tired or cold. ‘That’s your birthmarks,’ we would reply in sing-song-positive voices. She would nod then carry on playing, and I would scan her face for any minute flicker of distress.
‘I like being pink,’ she often said as she was growing up. But I was concerned she wouldn’t always feel that way.
My husband and I took her to her annual appointments at the birthmark clinic together, we made it a special day out, always doing something fun afterwards. On the train to London we would remind our growing daughter not to stare at the children she would see at Great Ormond Street, to remember that everyone is different and that we are very lucky not to be sick like some of the other children she would come across.
In every appointment, my child would sit across from the lovely Consultant, who had significant facial birthmarks herself, listening to the ways it may be possible to remove or reduce the abnormal pigmentation on her skin. Our little girl stood, in her pants, whilst photos were taken of her mottled skin from every angle. She never once seemed bothered.
Each visit she would voice her independent views and, in increasingly articulate language, she would tell us, ‘I don’t mind having birthmarks, it doesn’t bother me.’ I felt the need to warn her, ‘But it might, you don’t know how you’ll feel when you’re a teenager’. The Consultant nodded in agreement, explaining that laser treatment was improving all the time, ‘Think about it.’ She would say, ‘I’ll see you again next year.’
The appointment letter came through when my daughter was ten and she refused to go. I tried everything I could to persuade her, but she was adamant. ‘That appointment could be used for someone who really needs it.’ She told me. How could I argue with that? I postponed it until the following year.That summer my daughter went to a ‘photoshoot’ birthday party. All the girls dressed up in their pretty summer dresses and posed. Holding a camera in one hand and smiling at my beautiful daughter, the photographer asked what was wrong with her arm. When she explained about her birthmarks he asked if she wanted them photoshopped out.
As she relayed this story to me in the car on the way home I tried to contain my fury. ‘What did you say?’ I asked. My powerhouse of a daughter said, ‘I said no, why would I? They’re part of me.’
I still feel choked when I think of that day. I also feel ashamed. I was the one trying to persuade her to have laser treatment, to undergo hours and hours of painful procedures, a machine burning layers of her skin away. I was projecting the insecurities of my own teenage vanity on a child who was, clearly, far more self-aware and self-assured than me.
She refused the appointment the following year too, and we were told that if she left it one more year she would be taken off the list and would no longer be eligible for the treatment at Great Ormond Street. ‘Good,’ she said, ‘I’m really not bothered by my birthmarks, and if anyone else is, that’s their problem.’
There have been times when children have refused to sit next to her in class because they’re scared of catching something. I have seen people wrinkle their noses before asking, ‘What’s that?’ but my daughter’s attitude has never wavered, ‘Not my problem,’ she shrugs and gets on with her day.
Now she is a fully paid-up teenager and her attitude hasn’t changed. We were out for lunch the other day and she became suddenly animated, ‘I haven’t shown you this, have I?’ she pulled up her sleeve, ‘I’ve found a gap between my birthmarks that’s exactly the same shape as Africa!’ She pointed at her arm then Googled a picture of the continent, so we could compare.
So, we don’t go to Great Ormond Street anymore and she’s no longer eligible for treatment. Unless she’s freezing cold or unwell, her birthmarks aren’t particularly noticeable, many newer friends wouldn’t be aware of them at all unless she pointed them out.
What truly blows my mind is that she accepted who she was and how she looked from the start, and she recognised that if anyone else didn’t that really was their problem. She stated from a very young age that someone else needed that hospital slot and should take priority. I am only sorry that I didn’t listen to her sooner. Her stoic determination (the stubbornness which makes me want to kill her in other areas of life) will stand her in good stead. I could learn a lot from that kid.
Since this is her story to tell, not mine, I asked for her permission to put it out into the world. ‘Why not?’ she grinned after reading it, ‘I sound great!’ I rarely agree with this tall, funny, beautiful teenage girl these days, but right now, I couldn’t agree more.
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