Lorcan Meehan was six-and-a-half years old when his parents eventually got to court seeking compensation for the injuries he received at birth in University College Hospital, Galway.
At the end of last year, John and Noreen Meehan started six weeks in the High Court reliving the birth of their only child, who was left brain-damaged, suffering from cerebral palsy and epilepsy, and quadriplegic. His birth followed a normal pregnancy and he was full-term.
The hospital admitted liability after seven days in court, but the case dragged on as the defendants disagreed about the apportioning of responsibility. Then there was further argument about the cost of the necessary care. The final settlement was for £2.7 million.
"We've had six-and-a-half years of 24-hour care, which is ongoing," says John. "If he sleeps two nights of the month, that's it, and it's with medication.
"He goes to school once or twice a week. He'd have 20 or 30 seizures a day if you didn't intervene. He knows his parents, and he can see and hear. He loves lying on top of you. If he's sitting on you, being held, he has comfort. We've said that while we can lift him and hold him, we will.
"I don't know how we got by. The stress and anxiety is there all the time. We've never been away from him. Every time he was in hospital, and he was in hospital a lot, his mother stayed with him every night. We have three or four GP visits a week. I have to say, ever since he was born we got the best of care from the hospital paediatricians, the nurses and our GP. We could not live without our GP, Dr Kenny."
The Meehans were struggling with this 24hour care on their own when, two-and-a-half years ago, they saw a similar case reported in the newspapers and contacted the solicitor involved, Michael Boylan of Augustus Cullen and Son, Wicklow. He has been dealing with medical negligence cases since the Dunne case 20 years ago.
"We had two or three meetings with him, and a lot of documentation went back and forth, and then we got to court," says John. "Getting there was not too bad, but the court was hard going.
"They admitted liability on the seventh day, but they couldn't agree on the cost of nursing care, medical care and equipment.
"We heard the health board say in court that the Government had a bucket without a bottom of funds for equipment. Everyone in the court gasped. We've won our case and it's all over. But we know that there's children out there and they don't even get enough nappies."
This is why John and other parents who have been to court have set up Justice and Equality for Brain-Injured Babies.
"We felt no one represented these people. These children have no votes. We want to put pressure on the health boards and Government," he says.
The pressure group has only been set up in recent weeks, and John is encouraged by the response so far of the Department of Health, which has given it seats on the body considering the enterprise liability issue. One of the points they are making there is that the committee should be chaired by a judge rather than by a gynaecologist or anyone else who might have a vested interest in its recommendations.
"Our committee is made up of parents who've been to court and had their day. They have nothing to gain. We could just ride off into the sunset, but our aim is that the children this will happen to down the road will have the best quality of life they can," John says.
No money can compensate parents for the loss of the hope of a healthy baby who will grow into an independent adult. John and Noreen Meehan now hope for small miracles.
"The sad part for us is Lorcan never, ever smiled. If we could have one smile and could catch it on camera, we wouldn't know ourselves. We'd put it on billboards," John says.