Down's patient in bid for surgery

The case could set a legal precedent

The mother of a Down's syndrome child has told the High Court that she was devastated when doctors refused to carry out a life-saving operation on her child.

Maralyn Adey, of Thackley, West Yorkshire, is suing Leeds Health Authority for clinical negligence claiming doctors at Killingbeck Hospital refused to carry out surgery to repair her son's heart defect because he had Down's Syndrome.

Kristian, who is now 15 years old, uses a wheelchair and finds it increasingly difficult to breathe without oxygen equipment. He is likely to die from his heart condition.

Leeds Health Authority is contesting the case which began on Wednesday and is expected to last four days.

We thought we were going to have to take Kristian home and wait till he was 10 and that was it - we wouldn't have him any more

Maralyn Adey, Kristian's mother

Mrs Adey told the High Court in Leeds that she would have given permission for surgery to be carried out on Kristian when he was born if she had known that it was possible.

She said she was told his condition was inoperable and said she had been advised to take Kristian home and enjoy the time she could with him because he was unlikely to live past aged 10.

"I recall being knocked sideways and unable to believe what I was hearing.

"The doctor said there was nothing we could do so we should take Kristian home and enjoy him while we'd got him.

"We thought we were going to have to take Kristian home and wait till he was 10 and that was it - we wouldn't have him any more.

"We just didn't know what to do. It was just like we'd had a life sentence put on us as well and that was just terrible."

Mrs Adey said that had she been told then that surgery was available, even with a mortality rate of between 25% and 33%, she would have agreed to it.

She said: "It was a risk I was prepared to take.

"I wanted to give my son the best I could and if any operation had been available I wanted it to be the best.

"No operation comes without risk. If it was corrective for his heart and lung defect he wouldn't be in the position he is in now."

Discovery

When Kristian was four years old, Mrs Adey discovered that surgery could be carried out, which would give him a 70% chance of survival.

Mrs Adey declined the surgery. "Kristian had quite good quality of life at the time. He wasn't blue, he was doing things that other children were doing.

"He seemed to have got better from when he was a tiny baby.

"I didn't want to put him through all these problems and all these operations while his life was so good because I felt it would be sending him backwards at that stage."

Mrs Adey said Kristian was now "an extremely happy and loved teenager", adding: "That makes it sometimes easier - he enjoys every minute of his life and does all the things he's able to do but gets very frustrated about the things he can't do.

"His quality of life isn't brilliant and from day to day we have to watch him deteriorate."

Toby Stewart, representing Leeds Health Authority, suggested to Mrs Adey that she did not opt for the surgery because the mortality rate of up to 33% would have been "unacceptable".

He said: "You would risk putting your son at risk of an invasive procedure which may have resulted in his death?"

Mrs Adey replied: "At under one year old, yes, I would. I just couldn't believe there was nobody anywhere that couldn't do an operation on my son.

"I didn't know surgery was available. It was what I really wanted for him."

Kristian's father, Alvin, told the court that if surgery was offered soon after his son was born, he would have agreed to it.

Vashka Waterhouse, whose son Daniel was treated for a similar heart condition at the same hospital, told the court that she felt some doctors were against treating children with Down's Syndrome.

The hearing was adjourned until tomorrow.