Cataracts: 'He could have lost his sight for ever'

Cataracts don't only affect the elderly – they almost made three-month-old Charlie Brennan blind. Tim Walker reports

Charlie Brennan was born last April weighing nine pounds, with blonde hair and big, blue eyes. The birth took some time but was without complications. His Irish parents, Tamsyn and Hugh, had been living in Bermuda for six years, where Hugh worked as a chartered accountant; the doctors there carried out all the standard tests on the newborn and found nothing to concern them. "When your baby is born," says Tamsyn now, "you think of all the obvious things that might be wrong. But you don't think about cataracts; I thought they only affected old people and dogs."

Charlie has a sister, Alannah, who is 15 months older – so the Brennans' experience of her early development was still fresh in their minds when, after six to eight weeks, they noticed that their son was failing to hold their gaze for any length of time. "What any mother is looking for at that stage is that first smile, and we were getting smiles, so no alarm bells rang," Tamsyn recalls. "I knew blindness wasn't an issue because he had a playmat where he would grab toys and his eyes would follow certain things. So I brushed it off, and it was my husband who was more persistent, saying that Charlie wasn't developing the same way as Alannah had at that age."

Hugh was about to begin a new job back in London, and in July, three weeks before the family was due to leave Bermuda, Tamsyn took her son to the paediatrician for a routine check-up. The doctor performed some basic visual tests, she says, "and I just mentioned casually that Charlie wasn't really fixating on our faces at all. I asked if I should worry about it." Looking back, she realises that Charlie always held his head down, which she had attributed to his neck muscles developing slowly. In fact, it emerged later, her son was trying to see past two large cataracts, as if peering over a pair of spectacles.

The doctor made an appointment with an opthalmologist for the following day, where Charlie underwent a series of more serious tests. "The opthalmologist, who didn't have perfect English or a great bedside manner, said, 'Your child has cataracts; he's blind.' We were totally freaked out. We made the mistake of Googling the condition and of course got back all the negative results rather than the positive ones. You always hear about children in developing countries whose cataracts have gone untreated and they end up totally blind." Hugh Brennan's brother and sister-in-law are both GPs in Ireland, with medical contacts there and in the UK. Their advice was to get the child specialist treatment as soon as possible. "That really lit a fire under us," says Tamsyn. "We realised it was very urgent."

Cataracts at birth affect around one in every 2,500 to 3,000 children, explains Ken Nischal, the eye surgeon who would later treat Charlie. Sometimes the cataracts only develop after three months, for example as a reaction to steroids administered to combat bad asthma. Some children develop them aged six or older because they have a family history of the condition – though this wasn't true in the Brennans' case. If a parent sees a change in their child's behaviour or notices them becoming clumsier, Mr Nischal advises, the first thing they should do is get their eyes checked.

When a baby is born, doctors shine a light into each eye to check for "red reflex": the same sinister-looking red spot that a camera flash exposes. "If it's absent, the commonest cause is congenital cataracts," Mr Nischal explains. "And if nothing is done, by eight to 12 weeks the child develops wobbly eyes. If there's no visual stimulus for the first few months of life, the ability to develop vision disappears. And that's a catastrophe."

As adults, we think only of how well we can see, but children also use sight for crucial aspects of their development. "When my first child learned to walk," Nischal recalls, "he spent all his time looking down at the floor to see where he was going to put his next foot. Without sight, the development of walking is affected." The same is true of almost every aspect of growth, from language to social skills.

In fact, while Charlie's cataracts were large, they were partial – the red reflex was present, if small – hence his ability to grab toys. But Bermuda lacked both the equipment and the expertise to treat him, and local doctors told the Brennans that their best chance of treatment was in Atlanta. The operation there, however, would have been costly and have entailed Tamsyn staying in the US during her son's post-op care programme.

The world's highest concentration of paediatric opthalmologists, it turned out, was at Great Ormond Street children's hospital in London. And Hugh's brother had heard of a specialist there who was meant to be "phenomenal". As the family had been planning to relocate to London shortly anyway, they decided to simply bring their move forward.

"We were supposed to be leaving Bermuda in three weeks," says Tamsyn. "We left in three days. We didn't know what was going to happen, how severe Charlie's condition was, and we had to pack up the house and get my husband to his new job. I was all over the place. When I look back it feels like I was someone else for those few days. We'd been there six years, made friends and loved it, but we didn't really get to say goodbye – Charlie was our only thought."

Through their family contacts, the Brennans had managed to get their young son an appointment with Mr Nischal – the man Hugh's brother had recommended – who has been dealing with child cataracts for 14 years, and working as a consultant at Great Ormond Street for 12. "When someone is operating on your tiny baby," says Tamsyn, "trust is a huge issue. But the minute I met Mr Nischal, he was very kind, and he explained everything in layman's terms. He really put us at ease, and I took to him immediately."

Thanks to the pioneering work of Great Ormond Street's visual scientists, Mr Nischal was able to test the development of Charlie's sight against the normal responses of a child his age. "We did the tests and found that he was already below normal development," says the doctor. "There was no more time to waste." Charlie needed two operations – one on each eye. "I treat adult cataracts too," Mr Nischal explains. "I see those patients twice over the weeks following the operation, then I never see them again. But in a child's case, if you do the surgery and never see them again, you might as well not have done the surgery at all: it's the visual rehabilitation that's the most important thing."

A decade or so ago, Mr Nischal developed a new technique for pediatric cataracts known as TIPP (or "two-incision push-pull"), which is now popular with a number of other surgeons. It involves placing an implant in the eye, as does treatment in adults, "but because a child's eyes are going to grow, you have to predict what the refractive error – the strength of his glasses – will be when he reaches maturity at 16. If you made the child not need any glasses for distance now, then by the time he's 16, he'd be very short-sighted. You have to make child a bit long-sighted, so that as the child grows, that long-sightedness disappears."

Preparing a baby for a general anaesthetic is a difficult business for its parents, and Tamsyn was unable to feed Charlie before the operations, which took place a week apart in August. "It's a horrible few hours," she remembers. "Not being able to feed meant he was very upset going into the operation. When he came out he was groggy, and I hadn't expected him to be so bandaged up, so I got even more upset then than I had when he was going in."

Without permanent accommodation organised, the couple had been surfing their friends' sofas while Charlie was treated, but Tamsyn was allowed to spend the night after the first operation in hospital with her son. She is effusive in her praise of Great Ormond Street and its staff. Mr Nischal, for his part, is keen to emphasise that, while he's the surgeon, he is part of a team of optometrists, vision scientists and others who made Charlie's recovery possible.

That recovery was spectacular. "When he opened his eyes again," says Tamsyn, "he was a different child. The world had opened up to him. It was quite amazing. He was a happy baby before, but now he was just soaking up everything he could see. He can even pick something as small as a pea off the ground."

"A lot of the children I operate on," says Mr Nischal, "are only four or five weeks old, but Charlie was a bit older, and I definitely saw a change in his character. In older children, when they have cataracts taken out, there is always a dramatic behavioural change. It's very emotional for both the parents and the doctor. The first day you take the cataracts out of a four-year-old's eyes, and they open them and look at their parents, there can be a lot of tears."

It's now months since the operations, and Charlie's bandages are long gone, as are the uncomfortable eye drops he had to endure each hour for the first stage of his rehabilitation. His prescription glasses will become less and less strong as he and his eyes grow. His mother admits that a baby wearing glasses often attracts cooing comments in the supermarket near their south London home. Mr Nischal is hopeful that, by the age of eight or nine, though, he will need glasses only for reading. Though they spent every other day at the hospital immediately following the operations, Charlie now sees Mr Nischal only every three months. The doctor will nonetheless be part of his life until he reaches 16. "I wouldn't like that to change," says Tamsyn.

Neither his parents nor Mr Nischal know exactly why Charlie suffered from cataracts, but both agree he was lucky to get such speedy, effective treatment. There is a significant minority of children, even in the UK, who don't share his good fortune: not only a world-renowned hospital like Great Ormond Street at his disposal, but medically-savvy family members to advise his parents of the doctor's reputation. Still, says Mr Nischal, "There are good centres around the country where this sort of care can be delivered now. That wasn't the case 10 years ago."