Why the battle goes on to keep children’s heart surgery in city

Rachel Davis and her son Evan
Rachel Davis and her son Evan
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Despite the decision to end children’s heart surgery in Leeds, the fight goes on to overturn the plan. Katie Baldwin reports.

TODAY Evan Davies is a happy, healthy nine-week-old. However it could have been very different.

His mum Rachel fears that if he hadn’t been diagnosed with a heart condition before he was born, he might not have survived. It’s specialist care and treatment close to home that she credits with saving him.

“The antenatal diagnosis saved his life,” she said. “We would have come home and four days later he would’ve collapsed at home. It would’ve been luck whether we could get to hospital in time to save his life.”

A scan when Rachel was 20-weeks pregnant showed Evan had a problem with a heart valve, but medics also suspected a more serious defect. After extra scans, Evan was born naturally at 39 weeks, with specialist doctors on hand at Leeds General Infirmary in case he needed resuscitation.

Shortly afterwards it was confirmed that he was suffering from the more serious condition coarctation of the aorta. “They said he needed the surgery then and if he didn’t (get it) he might die,” said Rachel, 34. Aged just six days, Evan underwent major heart surgery.

He made an amazing recovery and within five days was at home. Now he is doing well and his doctors are pleased. He may need further surgery eventually, but for now Rachel and husband Miles are simply relieved his condition was picked up. However they know that if they wanted the same surgeon to operate, it could be difficult if surgery is no longer happening in Leeds.

“That’s devastating for us because we have such confidence in Leeds,” she said. “If we had had to go to Newcastle, I would’ve been on my own...Not to have the support of my family would’ve been very hard.”

Three years ago, no-one could have foreseen how children’s heart surgery was going to become such a contentious issue. It was the needless deaths of babies with heart problems in Bristol in the 1990s that prompted changes.

Experts decided having fewer surgical centres would be safer – not to save money, but because surgeons become better at carrying out very difficult procedures on tiny hearts if they have to do them more often. The Safe and Sustainable review was set up to draw up plans.

Programme director Jeremy Glyde said: “Royal colleges of medicine and professional associations have backed the NHS decision to pool surgical expertise in fewer, larger centres. Clinicians have made clear that these changes will save more children’s lives and reduce the side effects of surgery.”

At LGI, one of the 10 hospitals under review, the moves were initially welcomed. However last year it was revealed that the city’s unit was under threat and in July NHS bosses decided it should no longer carry out children’s heart surgery. Sick youngsters from Leeds and Wakefield would have to travel to Newcastle instead, sparking anger from families in the region.

A committee of Yorkshire councillors said they would appeal to the Health Secretary Jeremy Hunt. After encountering similar anger across the country, he asked the Independent Reconfiguration Panel (IRP), to review the whole process.

The Joint Committee of Primary Care Trusts, says it will work with the review, but that any delays only increase uncertainty. Chairman Sir Neil McKay said: “The decision ...was made after carefully considering a number of factors, which included evidence on patient travel times, transferring ECMO (specialist lung) services and demand on surgical services.”

Another challenge is in the offing too. Before the IRP review was announced, the campaign group Save Our Surgery had already launched legal action to overturn the decision through a judicial review.

Sharon Cheng, from Save Our Surgery, said: “The court case is taking precedence and we’re making a submission to the IRP as well. We still feel this region would be deprived should there not be heart surgery here...Things were overlooked before, and we don’t want them to be overlooked again.”

The court case and review decision are due in February.

“We have just got to remain hopeful because it’s such a logical thing to keep this service in Leeds.”

Campaigners need public backing for a massive fundraising event this Friday. Hundreds of schools and businesses have already signed up to Wear Red Day, supporting Save Our Surgery by contributing to a fighting fund for legal action attempting to overturn the decision to end children’s heart surgery at LGI. www.saveoursurgery.net, 0113 392 5907 or email info@saveoursurgery.net.