David Rose
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A British toddler with an extremely rare medical condition has flown to New York for an operation to repair her damaged brain with superglue. Ella-Grace Honeyman, aged 17 months, was born with vein of Galen malformation, which causes tiny holes in the brain’s main blood vessels and affects only a few hundred babies worldwide each year.
She was given months to live after blood seeped through the openings and flooded her skull cavity, causing a potentially fatal aneurysm. But in the latest in a series of high-risk operations, American surgeons have used the medical equivalent of superglue to stem the bleeding.
With the help of local fundraisers, Ella-Grace’s parents paid more than £100,000 for pioneering treatment in America and France, as there is a lack of trained surgeons in Britain to perform the operation. Although their daughter may need to have further surgery, she now has every chance of living a full and happy life, Laura and Ryan Honeyman, from Horsfold, Norfolk, have been told.
A team of surgeons inserted a remote- controlled tube containing an organic adhesive through her groin, past her stomach and heart, and finally into the base of her brain. Once there, they injected the glue into the holes in an artery and faulty capillaries, allowing the fluid in her skull to drain and removing the aneurysm.
About five cases occur each year in Britain and only two hospitals — Great Ormond Street, London, and Glasgow — are equipped to deal with them. But the family were told that Ella-Grace’s chances of survival would be greater if they travelled, first to France, and then to the United States, to see experts who had more experience in the surgery required.
“When we first learnt about Ella-Grace’s condition, we were devastated,” Mrs Honeyman, 29, said. “We were told she had a brain aneurysm that would kill her unless treated and we really thought we’d lose our baby girl. The operation was a success and worth every penny. She’s now doing what all kids her age should be doing — bouncing around, playing and having a good time.”
Ella-Grace had been in obvious pain before doctors detected the aneurysm shortly before her first birthday, Mrs Honeyman said. Her first operation in France went well, but the surgeon died two days afterwards, and the family had to head to the United States for more treatment.
Ella-Grace still needs a number of “top-up” operations to plug the remaining openings, and is due to travel back to New York next spring.
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I'm pleased that the op worked for them, but I really wonder why they felt they had to go to the States when Great Ormond Street (& Glasgow) have specialist teams? The daughter of a friend of mine has been successfully operated on using the same procedure, and without having to find £100K...
Marie, Gloucester,
I wonder if there was a way of detecting and preventing the onset of this condition prior to birth. I think of the Spanish woman's recent stem cell transplant and how a cheap TB vaccine could have save countless Euro's/Pounds.
Steve, Derby, England