The toddler with giant hands


A toddler living with lymphedema has had liposuction to reduce the size of her giant hands.

Cora Ruben was born with lymphedema, a genetic disorder which causes a build-up of lymph fluid and leads to extreme swelling all over her body.

The two-year-old from Minnesota currently has swelling in her abdomen, legs, feet and most obviously her hands.

But after numerous failed treatments, her parents Kasey and Brett, met with a pioneering expert in Germany, who found that the size of Cora’s hands could be reduced by liposuction.

Cora Ruben was born with lymphedema, a genetic disorder which causes a build-up of lymph fluid and leads to extreme swelling all over her body

Cora Ruben was born with lymphedema, a genetic disorder which causes a build-up of lymph fluid and leads to extreme swelling all over her body

Her father, Brett, said: ‘Her hands are obviously the biggest thing that people see. But what people don’t know is she’s actually got it in most of her body.

‘It’s through her abdomen, both legs, both feet. Her genitals, through her arms. And as she gets older it’s only going to get worse.’

Mum Kasey had a normal pregnancy, but immediately after giving birth doctors realised some obvious physical irregularities in her hands. However, they put the swelling down to a normal side affect of the birth.

Brett said: ‘The first few weeks we thought the swelling would go down. That’s what we were told.

‘[But} We saw the paediatrician and that’s when she suggested that it may be lymphedema.’

Lymphedema is an incurable and progressive condition. There are a number of treatments that can curb the symptoms, such as regular massaging to promote the flow of the lymph fluid and using compression bandages, but nothing significantly worked on Cora.

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In fact, overtime her symptoms got worse.

Kasey said: ‘In her case it has been growing, and that’s what alarmed doctors and her physical therapist. And it still is worsening and we haven’t been able to control it like you usually can with massages and wrapping and compression.’

But just when Kasey and Brett thought they’d run out of options, a lymphedema expert suggested they visit the Földi Clinic in Hinterzarten, Germany.

Kasey and Cora flew from the States to Germany, to meet with Professor Etelka Földi, one of the world leading experts in the condition.

Professor Földi said: ‘Lymphedema is in essence a chronic disease caused by the inefficiency of the lymph drainage system. When the lymph drainage system is inefficient then inflammation develops.’

Professor Földi prescribed a lymph drainage therapist to use specialised massage techniques to prevent the build-up of fluid in Cora’s hands.

However, upon examination Professor Földi found that the swelling in her hands only contained 20 percent of lymph fluid, the rest was due to overgrowth of fatty tissue.

Kasey said: ‘She said it was 80 percent fat, 20 percent lymphedema, and the reason why her swelling wasn’t responding was because the fat was basically keeping us from appropriately compressing her hands.

‘When you can’t treat the condition like you’re supposed to, when she’s not responding it’s, it brings up more anxiety.’

The cause of the fatty tissue is a mystery, and not usually a link to lymphedema.

To remove the tissue, Professor Földi suggested liposuction on the toddler’s hands, which should enable massage and compression bandages to reduce the rest of Cora’s swelling.

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Kasey said: ‘I don’t think anybody likes the thoughts of having their child go through surgery, but I think anybody with a child would do this. It’s not her fault she was born with this, so I’ll do anything I can to help her live a quality and happy life.’

Despite some swelling still evident, Kasey sees a significant improvement in her daughter’s hands.

She said: ‘Her ability to pick up things is just tremendously better. We’re able to push the fluid, her hands are soft, they’re not hard, they’re not heavy any more.

‘Her hands are soft enough now and they fit in her garments which compress her hands. When those are on, she can fit her hands in regular sleeves and she can do anything else anybody else can do.’

Professor Földi added: ‘I am almost certain that Cora can lead a normal life. Someday she will be a happy woman.’

WHAT IS LYMPHOEDEMA?

Lymphoedema is a long-term condition that causes swelling in the body’s tissues.

Lymphoedema is a long-term condition that causes swelling in the body's tissues

Lymphoedema is a long-term condition that causes swelling in the body’s tissues

It usually develops in the arms or legs.

Lymphoedema affects up to 10 million people in the US and more than 200,000 in the UK. 

It occurs when the lymphatic system does not work properly.

The lymphatic system is a network of channels and glands that remove excess fluid and help fight infections.

As well as swelling, which is often worse during the day, other symptoms may include: 

  • An aching, heavy feeling
  • Difficulty moving
  • Repeated skin infections
  • Hard, tight skin
  • Wart-like growths
  • Fluid leaking from the skin
  • Folds developing in the skin
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Lymphoedema can be inherited or occur as a result of infections, injuries or cancer treatment.

Around one in five women with breast cancer and half with vulval cancer develop lymphoedema. 

There is no cure. 

Treatment focuses on minimising fluid build up via compression stockings and a healthy lifestyle.

Source: NHS Choices 

 



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