As a report is published confirming the safety of children’s heart surgery in Leeds, Catherine Scott talks to Isabella Cook who has raised £170,000 for the unit which saved her
Isabella Cook was just 13 days old when she had her first lifesaving heart operation.
It was only when she collapsed at ten days old that doctors discovered her heart was on the wrong side, that two chambers were back to front and she had a hole in the heart.
Now aged 16 and smiling brightly it is hard to imagine that she has under gone two more serious heart operations, the most recent just last year which nearly claimed her life. Her lungs filled with fluid and her kidneys stopped working. She was in Leeds General Infirmary for over 10 weeks fighting for survival with her anxious parents Patti and Andy at her side.
“It was terrible,” says Patti from Harrogate. “The surgeons had never performed such an operation on a patient with a heart on the wrong side. They gave her 50:50 chance of survival and there were many times over those weeks that we thought we were going to lose her.
“She was amazing. She was old enough to understand what was happening, to understand that she was dying and so she didn’t complain even though she was attached to so many tubes and monitors she couldn’t move and had to undergo really painful procedures. We had setback after setback and she was exhausted. But the staff were amazing, and they have been through all the years we have been going there with Bella. They have saved her life on so many occasions we have lost count.”
It was while Isabella was in intensive care last year that the Government announced it was suspending children’s heart surgery at Leeds following concerns raised by clinicians in Newcastle and suggestions of high death rates. The unit was closed for a week before reopening after experts confirmed it was safe.
“We couldn’t believe it,” says Patti. “There was some talk that Isabella might need more surgery and we were petrified about what would happen.”
A report published on Tuesday said the decision to suspend surgery at the unit was based on inaccurate information. It came against the background of campaigning to keep the LGI children’s unit open after it had been chosen to close as part of a national plan to concentrate service in centres of excellence. Isabella and her mum travelled to London to lobby Prime Minister David Cameron to keep the unit open. The plan is to be re-evaluated.
“When Isabella was first taken ill as a tiny baby it took three hours to stabilise her before she could be taken to the LGI. She just wouldn’t have made it to Newcastle. It is vital that the unit in Leeds stays open,” says Patti.
The Cooks started fund-raising for the Children’s Heart Surgery Fund soon after Isabella had her first operation. Since then they have raised an impressive £170,000 and bought two pieces of vital equipment, one which was used on Isabella last year. “It’s really nice to know that it really does make a difference,” says Isabella who has check-ups every three months.
“We were so grateful for what they had done for Isabella that we wanted to do something to say thank you,” says Patti. “When you are in the hospital you realise that lots of the equipment isn’t provided by the NHS it is provided by fund-raising so we thought we’d just hold a little Hallowe’en raffle at our local pub.”
The event raised more than £3,000 and its success made the Cooks believe that they could achieve more.
Since then they have held annual Hallowe’en events and now the Cooks’ Hallowe’en Ball at the Cedar Court Hotel in Harrogate, which takes place this year on Saturday, is a diary date attracting more than 240 guests and last year raising £21,000. As well as the Children’s Heart Fund, they have given money to the kidney unit and also the Sick Children’s Trust.
“While Isabella was in hospital last year my husband and I were able to stay at Eckersley House close by the hospital which is funded by the Sick Children’s Trust. It also meant at weekends our two other daughters Olivia, 13 and Mia 11, could join us.”
Ever since she was old enough, Isabella has helped organise the fund-raising balls. “She writes letters to companies and goes round shops explaining what happened to her.” Isabella, who has a pacemaker fitted to regulate her heartbeat and has to take Warfarin daily, puts together a Powerpoint presentation which she gives to supporters at the Hallowe’en ball.
Last year Isabella was awarded the Yorkshire Child of Courage Award for her fund-raising efforts. Although her heart problems have dogged her life so far, Isabella is a very determined and positive young woman.
“I try not to let it get in the way,” says the St John Fisher sixth former. “When I was younger it was more of a problem as I couldn’t run around so much and I got tired easily and would run out of breathe. But now I try not to let it interfere.”
Isabella is fully aware that she will need a heart and possibly a kidney transplant one day but for the moment she is simply living her life to the full. “It is hard not to worry about her but we have always tried not to treat her any differently,” says mum. “But she wants to go on an exchange trip to France and she is understandably concerned, especially as she has to be very careful about her kidneys. Of course we are concerned too. But the whole reason she has gone through so much and so many operations is so that she can have a life, and so she has to go out and live it.”