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.

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.

She’s sharing Willow’s story to raise awareness of lymphedema and increase understanding of visible differences.

‘We noticed she had a lump in her leg and her foot had started to look clubbed,’ says Karen. ‘It was horrendous, my husband immediately thought the worst as he sadly lost his cousin and best friend to cancer. Both our minds ran wild over something that was so small because we just wanted her to be okay.

‘We attended the local hospital where at first they suspected she had kissed someone with a cold sore. I’ve heard so many incredibly sad stories of babies dying, so my mum took me to the waiting room where I flopped onto the seat and cried while they took bloods.

‘We were incredibly lucky that a paediatrician wrote Klippel-Trenaunay Webber Syndrome on her paperwork with a question mark beside it as that led me to research it when we were released.

‘It was heart breaking when I researched it because Google shows you the worst. It crushed me and my dad couldn’t even bring himself to look.

‘A few days after we were sent home, Willow had her first bleed from her rectum, so we went back to hospital and were admitted. We met several dermatologists and a paediatrician who mentioned that because she had port wine stains, it was a possibility that she could have KTWS, but she’d need an MRI and genetic testing to confirm it.

‘After two MRIs, Willow was diagnosed with lymphedema in both legs, complex lymphatic and vascular malformations in both legs and this too surrounds her bowel and perineum buttocks and rectal area.

‘Willow unfortunately has melena stools which we are currently monitoring and the lymphoedema causes her left leg to swell more than the right. She’s that amazing that her little feet don’t match either as they are not symmetric like mine or yours.

‘We are yet to know how it will impact her health. She’s super resilient right now but her future is just so uncertain, I never know when she will have melena stools (bleeds) and I’m fighting to keep her lymphedema at bay with daily compression.

‘I’m unsure how her intestinal issues will affect her, but she’s still undergoing tests and has a long journey ahead of her.’

Willow hasn’t lost her fighting spirit and continues to amaze everyone, earning her the name ‘Wonder Willow’ by nurses.

In June 2020, Karen, along with other family members, plans to climb Ben Nevis to raise money for St Oswald’s Hospice, who have helped Willow so much.

She said: ‘There are various complications and every individual is different. How the condition affects an individual depends on the complexity of their malformations, their lymphedema and how much of their body is affected. You are at high risk of infection so on constant watch for cellulitis and sepsis.

‘I carry out manual lymphatic drainage daily and I massage her legs every day. Willow responds well to her compression so I’m hopeful she will have every success in the future managing her condition. I’m hopeful one day she may be considered for a procedure where they can drain the fluid by attaching the lymphatics to veins.

‘Her legs are wrapped daily which is a lengthy process. As there is no cure for this condition, it’s all about management and hoping for more research and treatments in the future.

‘We hope to climb Ben Nevis in June 2020 to raise funds for St Oswald’s Hospice and the Lymphoedema Support Network. I am now part of a group and speak to other people who have the condition and was pleasantly surprised at how well they all manage their conditions.

‘Being rare is beautiful and amazing. Lymphedema may make Willow, and others like her, look different but it does not define her/them.

‘Don’t worry about looking, it’s human nature, but please smile and say hello also.’

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