A teenager at the centre of a treatment dispute has a 50% chance of a successful kidney transplant, a court has heard.
This week a judge is hearing evidence at the Court of Protection, sitting in Liverpool, about the care of William Verden, 17, from Lancaster.
His mother Ami McLennan, 45, says a transplant for her son, who is on dialysis and suffers from steroid-resistant nephrotic syndrome, is a “feasible option” and has made an appeal for a donor.
However, specialists treating William, who has autism and ADHD, at Royal Manchester Children’s Hospital say a transplant is not in his best interests.
On Tuesday, independent expert witness Professor Moin Saleem said the risk of recurrence of kidney disease was not enough alone to deny him a transplant.
He told the court the “best-case scenario” for William would be a successful operation, with a further transplant required in 15 to 20 years.
Prof Saleem agreed with lawyer Emma Sutton, representing William, that his present dialysis regime was “significantly onerous” because of his learning difficulties.
He agreed with the clinicians’ view that William’s life expectancy would be 12 months if dialysis continues as the sole treatment plan.
William’s medics argue the chance of disease recurrence from a transplant would be nearer 100%.
Lawyers for Manchester University NHS Foundation Trust say the follow-up treatment in that event, a plasma exchange, would involve sedation and ventilation, possibly up to six weeks.
It is said he will need a minimum seven days of sedation and ventilation to prevent him pulling out lines and catheters even if all goes well and there is no disease recurrence.
They argue William’s learning difficulties would make it much harder for him to tolerate any necessary post-transplant treatment and it is likely to cause him physical and psychological injury.
A trust physician, who cannot be identified for legal reasons, told the hearing that children who had been mechanically ventilated for six weeks had described it as “torture”.
He said: “I have had children who have ended up on long-term ventilation management and they have said ‘why have you done this to me, It’s awful’.
“I fear he (William) might experience that.”
Lawyers for his mother say a shorter period of sedation and ventilation might work and if there was recurrence there is a reasonable or good prospect of successful treatment.
The court has heard there is no direct evidence that William had deliberately pulled out lines while on dialysis in the past two years.
Ms McLennan believes a 50% chance of a successful transplant is a chance worth taking.
She says her son should not be defined by his autism.
Mrs Justice Arbuthnot will ultimately rule what is in William’s best interests after she has heard all the evidence in the coming days.
