that's life!
Simone Johns, 30, Springfield, Qld
Water droplets flew through the air as the girls played together in the shallow water. I smiled as I watched.
It was a gorgeous spring day and my partner Aaron and I had taken my two girls, Gemma, then four, and Marley, then 16 months, to the beach for a fun day.
Sadly, my enjoyment was short-lived.
Looking over at Aaron, I saw him frowning at a group of people nearby. ‘What’s wrong?’ I asked, keeping an eye on the girls as they paddled close by.
‘Those people are staring at Marley,’ he said, frustrated. Of course they are, I thought to myself.
Marley is adorable – why wouldn’t they look? But as I turned towards them, I realised it wasn’t Marley’s cuteness that had caught their attention.
It was her arm.
Marley’s a little different to most girls, you see. Her right arm is swollen and covered with a dark blue mark that spreads from her hand to her chest.
The mark is caused by a rare disorder called Klippel- Trenaunay syndrome (KTS).
It’s a condition that affects the development of blood vessels, soft tissue and bones in a limb, and is characterised by a large birth mark known as a port-wine stain, abnormal growth of soft tissue and problems with the bones and veins.
I first noticed the marks on Marley’s arm the day after she was born. ‘It’s probably just a vein malformation,’ a paediatrician initially told me.
‘It won’t cause her any issues.’ Doctors performed an ultrasound and concluded that, while they couldn’t be totally sure what the mark was, they believed it was harmless.
A few weeks later I was referred to a dermatologist, who was stumped by the cause of Marley’s mark.
Still, he agreed that it was most likely harmless and I decided to keep an eye on how it developed over time.
Marley’s big sister, Gemma, was confused by the discolouration at first, even trying to scrub it off when she had a bath with her sister.
But in time the mark just became part of Marley. Then, when Marley was around five months old, I noticed her arm beginning to swell.
She was a gorgeous chubby little thing, but it was clear that her right arm was a lot bigger than her left.
It wasn’t until I took her to the GP that I realised just how unusual it all was.
Her doctor took one look and referred us to the dermatologist, who referred us on to a vascular specialist.
Arriving to see that doctor a month later, it didn’t take long at all for a diagnosis. ‘I can tell you what this is straight away,’ he explained.
‘This is a textbook case.’ He told me my girl had KTS, a rare condition affecting one in 100,000 people. Its cause is unknown.
The swelling in Marley’s arm will likely worsen,’ he said. ‘But with management, she’ll lead a relatively unaffected life.’
It was a relief under the circumstances, and soon Marley was fitted with a special compression suit that she could wear to help with the swelling.
Researching treatments, I even met up with other KTS families in our area and Marley made some great new friends.
Thinking I had done everything I could to help Marley, I never even considered that some people might jump to shocking conclusions about my girl.
The day I went to the beach with Aaron and the girls was the first time Marley’s arm had really been on display.
As the young family nearby pointed, whispered and shot dirty looks at Aaron and me, I thought they were just rude at first.
It was only afterwards as I talked to other mums on Facebook that it dawned on me.
They thought the mark was a bruise, I realised. They think I hurt my girl.
I was furious! It was time to spread the word and raise awareness.
Logging on to my Facebook account, I started a post where I told the story of our day at the beach.
I was so pleased when my friends and family began sharing my words. When I woke the next day, I checked my phone in disbelief.
I had hundreds of notifications. My Facebook post was spreading far and wide.
All day I checked in and watched it reach more and more people, lots of them leaving lovely positive comments for me and my bub.
Beautiful little girl, one wrote. Good on you for raising awareness, posted another.
Finally, I really felt I might have made a tiny difference. The post also helped me connect with families around the country who had a child with KTS.
Two months on, it’s been shared more than 300,000 times.
I’m so grateful to everyone who helped spread understanding of Marley’s condition, and I’m so glad I didn’t take those judgmental stares lying down.
I hope awareness will create a more accepting future for my special girl.
What is KTS?
Klippel-Trenaunay syndrome is a condition affecting development of blood vessels, soft tissues, and bones.
The disorder has three characteristics: a port-wine stain birthmark, abnormal overgrowth of soft tissues and bones, and vein malformations.
The birthmark is caused by small blood vessels swelling near the skin’s surface.
The cause of KTS is unknown. Researchers suspect it may result from changes in one or more genes that regulate the growth of blood vessels during a baby’s development.
Originally published in that’s life! Issue 5, 2015
Related stories
Native ad body.
Native ad body.
Native ad body.
