Sports Calendar

Kam and Ambika Pindoria

What doctors at Great Ormond Street didn’t know, in the initial rush to save Sriya’s life, was exactly how much their baby daughter meant to her parents. They’d been trying to have children for eight years. When their son arrived in 2001 it seemed miraculous, and when Ambika became pregnant again in 2002, it was like a gift from God. “We couldn’t believe our luck, and really thought of the little girl inside as a goddess.” Kam and Ambika researched the outcomes for those who had had surgery, and became clear in their own minds that the risk of brain damage was low. Having had disabled relatives, for them this was the most vital indicator of quality of life.

“I still remember Mr Bailey’s words,” says Ambika. “He said: ‘Her quality of life should be good if all goes well.’ And that was the turning point. I think that if he’d said otherwise, we might have decided in the other direction. But partly because she was such an angelic child, we wanted to pursue it. We always knew we were in for a long haul. The doctors said it could be five years, which we thought was reasonable, and we’re still on target.

“It was strange really, it wasn’t as if we kept on being asked big decisions. It was more that things kept going wrong all the time, and we just had this innate desire to keep this beautiful child. You do sort of get pushed along by events. The staff at GOSH don’t tell you it’s over until it really is, and they do give you every glimmer of hope. But if they didn’t give you that commitment, Sriya wouldn’t be alive today. There was never a point where the doctors said there was nothing more they could do. If they had ever said let her go because we think her brain’s damaged, we would have gone with that.

“I think they knew how special she was to us — that we couldn’t have another child to help heal the wound.” Kam and Ambika just keep on looking ahead. “We aren’t out of it yet, so it’s hard to look back and be objective about the whole thing,” says Kam. Ambika still finds it almost impossible to look at some of the pictures of Sriya while she was in hospital. Somehow, throughout it all (Kam visited GOSH every day for 185 days in succession and was constantly liaising with doctors) they managed to keep on working (they are both private tutors), keep a presence at home in Essex for their son, Darshan, who is now 6, and keep their marriage together. They admit it’s still hard.

Now Sriya’s at home, the responsibiltity for making decisions is all theirs. “Now we’re having to fight constant battles to get Sriya the services she needs at nursery, organising nursing care . . . it goes on and on.”

THE CONSULTANT

Martin Bailey, a paediatric ear, nose and throat surgeon

“I remember that at our first meeting, Mrs Pindoria, in particular, was in a state of some shock and was quite withdrawn, and it was difficult to know how much of the information I was trying to explain she could take on board. It had to be explained quickly because a decision had to be made before the lungs deteriorated too much.”

Bailey says that while he was explaining the odds to the Pindorias, he knew in his own mind what he wanted them to decide: to have the surgery. At the same time, he was trying to explain what they didn’t want to hear: that it would be a long haul of uncertain outcomes.

“You have to depersonalise it because if you get too emotionally involved, you can’t make dispassionate decisions. But at some stage you do have to put yourself in the position of the parents and ask yourself if this were my child, what would I do? So, somehow, you have to try both to put yourself in their shoes and retain an objective clinical perspective.” There had been occasions with other patients when parents decided that they didn’t want to put their baby through it. “That’s hard,” says Bailey, “but generally parents want to be optimistic, and part of our job is to temper that. On several occasions, I had to remind Mr Pindoria that there was a good chance of his daughter dying. When the initial repair had broken down, we had to ask the parents whether we should do it again. Redoing it is hard because of scar tissue. So I felt it had to be a decision we all came to together.

“These situations are often portrayed as a fight between doctors and parents, but I can’t say I’ve ever been involved in a situation like that. Sometimes I wonder when conflicts arise whether the parents aren’t amenable to reason, or communications have been handled badly.”

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