Mum worried baby would die when lymphedema caused her leg to swell

When Karen Diamond, 28, noticed her two-week-old baby had a lump in her leg, she panicked.

Karen, a team manager from Gateshead, was already a mum to nine-year-old Bentley when she welcomed her daughter Willow on 29 April 2019 at 37 weeks and one day, weighing 7lb 2oz.

Willow was born with a port wine stain on her back and hips, something Karen and her husband Kris weren’t aware of until she was delivered.

Then when Willow was two weeks old, Karen noticed a small lump in her leg and immediately rushed the baby to hospital. The doctor noticed Willow’s feet looked slightly clubbed and so asked if she had ever been kissed by someone with a cold sore, questioning whether the child could have herpes.

At three weeks old, Willow was admitted to hospital following rectal bleeding and it was there that doctors noticed she had extra lymphatic fluid in her legs, suspecting Klippel-Trenaunay Webber Syndrome (KTWS), a vascular disorder which can cause limbs to be disproportionate because of excess lymphatic fluid, often a result of birthmarks.

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After two MRI scans it was revealed that Willow’s swollen legs weren’t indeed down to lymphedema, when excess fluid collects in the tissue, and complex lymphatic and vascular malformations in her legs.

Lymphedema is a long-term condition with no cure.

Karen now tries to reduce the swelling in Willow’s legs with daily massages and manual lymphatic drainage.

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