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Aaron Rai, who is seven weeks old and cannot see through his right eye, will have surgery in the US after his parents found one of only two doctors in the world who perform the operation on babies.
James Aquavella, of the University of Rochester Medical Centre in New York, will replace Aaron’s cornea — the transparent dome of tissue that covers the eye and focuses light — with a plastic prosthesis. If the £11,000 operation is successful, he should eventually be able to see with an eye that would otherwise have remained sightless.
Aaron is the second-youngest child in the world to have an artificial cornea implanted.
At present, damaged or diseased corneas are replaced with tissue transplanted from dead donors. These transplants usually fail in infants, as their highly active immune systems reject the grafts as foreign. But if the brain is not exposed to normal vision in the months after birth, it will never develop the capacity to process visual information properly.
This means that children born with corneal abnormalities are often blind or poorly sighted for life.
“There is a very small window of opportunity,” Professor Aquavella said. “Vision is a training process, and if you miss the window the eye is never going to be right.”
Artificial corneas are biologically inert, so they are not rejected by the immune system. All 19 cases that have been attempted by Professor Aquavella and his colleagues have been successful.
Aaron’s parents, Surinder, 29, and Ranjit, 27, were unable to find a doctor in Britain who would operate on their son. They had noticed that something was wrong as soon as he was born. They have another child, Eisha, who is 15 months old and has normal sight. “As Aaron was passed over to me, I noticed that one of his eyes had a silvery film over it,” Mr Rai said.
After several consultations with specialists, the disorder was diagnosed as Anterior Segment Development Anomaly, in which the cornea is opaque. The condition is caused by a spontaneous genetic mutation.
Artificial corneas are available in Britain, and operations have been performed in Britain on older children who were blind in both eyes. But because Aaron has one good eye, doctors felt that the potential benefits did not outweigh the risks of surgery.
Mr Rai, a project manager with the oil company ConocoPhillips, decided to investigate the options, and found Professor Aquavella’s details.
“I managed to find his personal e-mail address, and to my surprise he responded within a couple of hours,” he said. “We then arranged a visit last week to discuss it with him.”
His wife was reluctant. “I was very worried about putting a seven-week-old baby through surgery,” she said. But she was won over when the family visited Professor Aquavella and met a family whose daughter had had the operation.
“The trip was the clincher,” Mrs Rai said. “His passion really came over. Meeting the little girl who has had the operation was also instructive. We could see she is a normal, well-adjusted child.”
After the operation, Aaron will have to wear a patch over his good eye intermittently for several years, to prevent lazy eye syndrome. This happens when the brain favours the signals coming from one eye ahead of the other.
The family expect the whole process to cost at least £30,000, including travel, accommodation and follow-up visits, but they consider themselves lucky.
Mrs Rai said: “We were very fortunate in that we were sufficiently focused and that our perseverance paid off so that we able to identify an alternative way forward. We were also fortunate that Aaron was diagnosed very early on. If you were a family who didn’t know how the medical profession works, who didn’t have the advantages we’ve had, you could end up stuck in a corner.”
Mr Rai added: “It feels a lot like the film Lorenzo’s Oil. If those guys can come up with something, I felt we could.”
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