By Ami McLennan, 16th April 2023
Editorial note: This is a blog post by Ami McLennan whose son, William Verden, was at the centre of Court of Protection proceedings in 2022. The key issue before the court was whether it was in William’s best interests to have a kidney transplant (if a donor could be found so that this would be possible). Several observers blogged about the hearings from a range of difference perspectives (e.g. Introducing an upcoming hearing: Is a kidney transplant in his best interests?; Is a kidney transplant in his best interests?; Listen to him, listen to his mother: The William Verden hearing; Advocacy in the William Verden hearing: Observations from a trainee barrister). The judge concluded that a transplant would be in William’s best interests. The judgment is publicly available: Manchester University NHS Foundation Trust v William Verden & Amy McLennan  EWCOP 9. (Note: There’s an earlier judgment which explains why – unusually – we can name William and identify him publicly: Manchester University NHS Foundation Trust v Verden & Anor  EWCOP 4). The transplant took place on 7th August 2022. In this blog post Ami McLennan reflects on the circumstances that led up to the court case, and brings us up-to-date on what’s happened since William had his kidney transplant.
In December 2019, my son William Verden was diagnosed with a rare kidney disease which required kidney dialysis to keep him alive. He also has autism and a learning disability. This means he finds it more difficult to cope with going to hospital and receiving medical treatment.
William began to show signs of anxiety and occasionally aggressive behaviour while he was in the hospital as an inpatient for an infection whilst on peritoneal dialysis. It was all unknown to William and he had no idea he was so poorly and no idea why he was there. Due to William’s needs, he requires time to process things and it’s very important he’s given the opportunity to do this. Whilst receiving dialysis, clinicians were frequently unable to complete some of the tests required, such as taking William’s blood pressure every 30 minutes as William would present in an anxious manner, due to needing the time to process what is happening. Many routine medical procedures, when not carried out with proper concern for William’s needs, could cause William to behave in ways that professionals find challenging. I felt that some doctors and nurses became agitated because they were unable to complete tests in what is deemed a ‘normal’ timeline.
Clinicians felt that it was not in William’s best interests to continue on haemodialysis, which was the next best available treatment, as the peritoneal dialysis was not working properly; the only alternative options proposed were kidney transplant or palliative care. We were told by his clinicians that William’s behaviours were so aggressive that he would not tolerate dialysis long-term and would not be able to cope with the care needed post-transplant, without a long period of sedation and ventilation in the Intensive Care Unit.
I was devastated by the news that there appeared to be no active treatment options available for William. I was told that the risks of the period of time in intensive care were likely to outweigh the benefit of William receiving a new kidney. So that left palliative care. I felt angry and upset – his life didn’t seem to matter because he was thought of as “broken”. But surely, he deserves the same chance at life as anyone else.
There was a delay of a year before William was put on the transplant list, while doctors continued to recommend the palliative care route, which was very wrong in my opinion. The only way he got on to the transplant list in the end was because we went to court – and I don’t think that should have been necessary.
I was over the moon when the clinicians agreed, during the court proceedings, that the risks of 14 days of sedation and ventilation, although not without risk, would not outweigh the benefits of having the kidney transplant.
Then I thought it would be difficult to find a donor but the call came through about five months later that there was a deceased donor. I was in complete shock and dropped the phone. I kept pinching myself. My boy has a chance at last – this was all we’d ever hoped for. My anxiety was running high but my heart was exploding with sheer relief.
William had his kidney transplant in August 2022. It all happened really quickly once the donor was found, which in my opinion was better for William. When we went into hospital for the transplant he just thought he was having a dialysis session – but he was sedated and taken to theatre. His time in intensive care was hard both emotionally and mentally for both William and for me. William’s kidney took a long time to work, meaning he required further dialysis to remove fluid. I just kept praying, and I kept reading to him and talking to him. It helped me to help him in a strange way. William coped very well with both recovery from the transplant itself and the sedation and ventilation.
When William was extubated, a team was on standby to restrain him as the doctors expressed concern that he would pull lines out and act aggressively. However, William did not touch anything and did not attempt to do so.
After being weaned off sedation, there were only a couple of incidents where William hallucinated and thought that someone was pulling the central line in his neck. As this line was not being used, I requested that it be removed to minimise the risk of him pulling it and making him more anxious.
When in ITU, William contracted sepsis and E.coli, and had urine infections constantly until December 2022. However, his blood tests from January, February and March 2023 show that he is improving all the time. Recovery is a work in progress, and we still do struggle to encourage William to drink 3 litres of fluids and urinate. The doctors were concerned that William’s stay in ITU could have an impact on his mental health and general wellbeing following the surgery. However, none of the psychological risks have occurred. William does not appear to remember being in ITU or having a transplant. William is back to his old self and is able to enjoy his life again, playing golf, snooker and just being back at home.
When he was poorly after the transplant, the doctors were saying “we said this would happen” and “don’t get your hopes up” – but he pulled through, like I always knew he would. If I’d listened to them and not taken the case to court, William would have been sent home in September last year, and had palliative care, and he would be dead now.
Parents know their children best and medical professionals need to listen more to parents, and learn more about children and adults with additional needs – because in my experience there is a lot of ignorance among health care professionals about people with learning disabilities and autism.
If I were presented with this situation again, I would most definitely do it all again in a heartbeat. William’s situation demonstrated to me that although there are risks to being placed in intensive care, it was absolutely the right decision for William.
Finally I want to say to parents of other children with autism and learning disabilities that it’s worth going to court when you don’t agree with what doctors are saying is in your child’s best interests. Judges can be fair and you can get the right outcome.
Ami McLennan is William Verden’s mother.
Note: With thanks to Ami McLennan for the photograph of her son.