Eva ‘doing really good’ after spinal surgery

A 10-year-old girl whose lifesaving spinal surgery was cancelled seven times is finally home and “doing really good” after finally getting an operation, her family have said.

Twelve weeks ago, Eva Tennent’s family were told the curvature of her spine had become so severe following the delays that her condition was now “inoperable”.

But following BBC Scotland News coverage, a fresh review led to the operation going ahead at Edinburgh’s children’s hospital.

Her family said she was doing “amazingly” following the surgery and could be back at school after the summer.

Eva’s dad, Stephen Tennent, said the turnaround in her condition had been unbelievable.

He said: “They told us nothing could be done but now we have the old Eva back.

“She is very cheeky. She obviously can’t talk but she can talk with her eyes.

“In her own wee way she is really funny, but it’s not been there for a long time, and now it’s come back.”

Eva has Rett syndrome, a rare genetic disorder that affects brain development.

She also has advanced scoliosis that causes her spine to twist and curve to the side.

The curvature of her spine was 60.89 degrees in May 2022 but went up to 107.9 degrees last year. By March, it was 110 degrees.

This meant it was squeezing her ribs and pelvis together, putting pressure on her right lung and liver.

Her family said three of her operations at Edinburgh’s Royal Hospital for Children were postponed due to staff shortages.

Then Chris Adams, the spinal surgeon who had planned to finally operate on Eva in March, was suspended by NHS Lothian just days before the procedure.

Mr Adams had previously spoken out about the impact of nursing shortages on waiting times for children requiring spinal surgery.

Eva’s dad said the surgeon who initially took over Eva’s care told the family that nothing could be done to improve her condition.

“I was devastated,” he said.

“He told us that if they had maybe done the operation when Eva was first diagnosed with scoliosis then they could have made a difference.

“But then they left it and left it and left it, when Eva was deteriorating.”

Mr Tennent said: “I think it’s shocking the way they treat kids with special needs.

“It’s too easy for doctors to decide it’s end of life care, without knowing the child.”

After Eva’s story made headlines, a third surgeon suggested a nine-hour operation could relieve Eva’s pain and improve her prognosis. It went ahead in April.

Eva’s mum, Jill Lockhart, said Eva’s spine was now “poker straight”, relieving her pain and prolonging her life, although her progressive condition means she is still in respiratory failure.

Ms Lockhart praised the staff on the wards for the care Eva received but said the way the management team treated them was “disgraceful”.

The family said they had yet to receive an apology from NHS Lothian.

Dr Tracey Gillies, NHS Lothian’s medical director, said: “Although we have apologised to Eva and her family face-to-face on a number of occasions, we understand how distressing it is to have a procedure postponed and I would like to repeat our sincere apology once again.”

She added: “Medical opinions, particularly in such a complex area, can differ and is the reason that cases are discussed with the full clinical team before any treatment decisions are made.”

Eva will turn 11 on Friday.

Her mother said they could not have asked for a better birthday present for her.

If things go well, Eva will be able to return to a special school for children with complex needs after the summer holidays – two years after she last spent time in a class with other children.

Her dad said that for now Eva is happy watching cartoons and enjoying eating her favourite macaroni cheese and plenty of chocolate.

He said: “It’s been a rollercoaster but she’s getting her personality back and having a life again. That’s what we wanted all along.”