Watching her darling little girl Kate fight for every breath, her big blue eyes filled with pain, Bridget Chandulal knew that her six-year-old might have only hours left to live.
For a year, Kate (6) had been in Starship Hospital with a severe brain infection. She was born with Crouzon Syndrome, a rare genetic condition that causes the bone of the skull and face to fuse, and from birthonwards the little girl has battled medical complications, as well as having more than 100 surgical procedures.
Now, with an infection causing fluid to build up in Kate’s brain, the hospital’s medical staff told Bridget they would not be performing any more surgery to remove the fluid. With all hope gone and Kate now desperately ill, the Auckland mum-of-two gently explained the doctors’ decision to her daughter.
“If they don’t operate will I go to heaven?” tiny Kate asked. Fighting back her tears, Bridget (49), who also has Crouzon Syndrome, knew that she had to tell the truth. “Yes,” she whispered, stroking Kate’s soft curls.
For a moment, Kate fell silent, thinking about what that meant. Then she spoke: “oummy, I don’t want to die.”In that instant and with Kate’s plea ringing in her ears, Bridget felt a renewed sense of determination – there was no way she was going to let her daughter go without a fight.
“I knew that if she didn’t get immediate attention my precious little girl would die,” explains Bridget. “I could see the doctors’ point of view – they had never come across a child like Kate, who has always had the odds stacked against her. They genuinely didn’t think she was going to make it and didn’t want to put her through any moretrauma. But I’m her mum, and I knew Kate had some more fight in her. I knew that she wanted to live.”
Bridget found a telephone book and scoured the lawyers’ listings. The first one she called turned out to be an old school friend she hadn’t seen since childhood. The lawyer instantly agreed to help and came to the hospital straightaway.
“It must have been meant to be,” says Bridget, who called an urgent meeting with Kate’s doctors at which they reconsidered and agreed to give Kate more treatment. The wee girl was taken to the operating theatre, where the extra fluid on her brain was released and a new drain tube put in.
Having the surgery when she was so weak was hazardous for Kate, but once again she pulled through.
Now, five months after the surgery, Kate has been deemed well enough to leave Starship and is staying at a North Shore rehabilitation centre. As she plays a game of chess with her daughter at the centre, Bridget says she’s constantly amazed by Kate’s bravery and strong will.
“There have been several times when I’ve been told she’s not going to make it, but she has always proved thoseexpectations wrong,” smiles Bridget. Readers fell in love with Kate four years ago, when New Zealand Woman’s Weekly first visited her and her family.
Bridget and her husband Kevin, from whom she is separated, always knew there was a 50% chance of passing Crouzon on to any babies they had. While Kate was born with the disorder, her elder brother Benjamin (9) is free of it.
Despite spending much of her short life in hospital suffering from infections, Kate started school last year, although she had to leave after a term when she became unwell. Although Bridget was initially worried Kate might be teased because of her appearance, it didn’t happen.
“Kate’s got this amazing charisma and people instantly love her,” says Bridget, who has given up her job as a medical clerk to care for Kate. “We tell her all the time that she’s beautiful. That quiet confidence she has helps her cope with anything. She’s an amazing little girl.”