Dafi Evans (left) with parents Catrin and Eilir and sister
Children suffering from a rare condition which can kill babies within days are being saved - with glue. The adhesive is being given injected to combat Vein of Galen malformation, which affects communication between the arteries and veins in their brain. Dafi Evans, of Talgarreg, Ceredigion, is one of the toddlers treated at Great Ormond Street Hospital in London and his mother called it "truly amazing". Dr Stefan Brew has operated on 50 children with Vein of Galen since 2003. The condition puts a strain on the heart and babies usually die within three or four days as a result of heart failure or water on the brain.
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It's been a rollercoaster year but he's well and doing everything that he should
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But by injecting the tissue adhesive Histoacryl through a catheter into the baby's groin, the affected area of the brain is blocked. Dafi's mother Catrin was heavily pregnant when she and husband Eilir were told their unborn baby had the life-threatening condition. "Very lucky" But after a "rollercoaster year", 16-month-old Dafi is healthy and as full of energy as any other toddler. Mrs Evans, 32, said she feels "very lucky" that staff at Bronglais Hosptal in Aberystwyth spotted something was wrong during a routine scan at 36 weeks. The couple was sent to the Elizabeth Garrett Anderson Hospital in central London, where Vein of Galen malformation was diagnosed. Dafi was delivered by caesarean section and immediately whisked off to GOSH for treatment by Dr Stefan Brew, who has operated on about 50 children with Vein of Galen.
The glue treatment was pioneered in France and has been carried out in London since 2003
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When Dafi was just a day old, glue was squeezed into the affected part of his brain through a catheter, plugging the leak. First birthday Dafi improved straight away and was able to go home but a check in Cardiff two months later detected a second leak, so Dr Brew performed the procedure for a second time. Dafi had his fifth operation on his first birthday and expects a sixth next month. "It's been a rollercoaster year but he's well and doing everything that he should; developing as he should," said Mrs Evans. "It's great. It's unbelievable. He truly is fantastic, full of energy. He's exactly like his sister." Former headteacher Mrs Evans added: "I couldn't believe how simple an operation it looks; it's so non-invasive. "It's so dangerous but he comes back looking perfect - no scars, just a tiny cut." Stressful procedure Consultant interventional neuro radiologist Dr Brew described carrying out the highly skilled procedure as "incredibly stressful" but satisfying. "The children go from looking like they were about to die, often overnight, to looking very well," he said. About 60% of children treated with the injections go on to live a normal life while about 20% are left with only a mild disability. Ten per cent are left severely disabled and one in 10 children die. "No matter how careful you are, there's an element of chance to it," Dr Brew. "What is known is that if you don't treat them, they die." The glue technique was pioneered by Dr Pierre Lasjaunias in France in the 1980s. Dr Brew has been performing the glue treatment since 2003. Mrs Evans added: "The work Dr Brew's done is totally amazing. It's truly amazing."
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