‘My lovely boy has as much right to life as any “normal” teenager’: Why this mother fought a major court battle after doctors refused to give her son William, 17, a life-saving kidney transplant because he has learning disabilities
Six foot tall and with a sunny smile, William Verden has the same zest for life as every other 17-year-old.
With bags of energy, he loves playing golf, kicking a football, doing odd jobs and is a dab hand at using a jet-washer. As long as he’s busy, active and outdoors, he’s happy.
You’d never imagine that he was seriously ill with a rare kidney disease — let alone at the centre of a life-or-death legal battle over his fate.
‘He absolutely loves life and has so much to give,’ says his devoted mum Amy McLennan. ‘He’s cheeky, kind, helpful and would do anything for anybody.’
Then, she adds fiercely, ‘He deserves the same chance as every other child.’
For last September, William, who has autism, Attention Deficit Hyperactivity Disorder (ADHD) and learning disabilities, was handed what Amy describes as a ‘death sentence’. She was devastated when the hospital treating William refused to give him potentially life-saving treatment.
Medical staff feared that, because of his learning disabilities, William wouldn’t be able to cope with the physical and psychological trauma of a kidney transplant that came with no guarantee of success.
Fighting chance: William Verden can get the treatment he needs
Last week, the Court of Protection ruled that the kidney transplant should go ahead — despite doctors from Royal Manchester Children’s Hospital arguing it was ‘not in William’s best interests’. Pictured: Amy McLennan outside court last week
The case raises uncomfortable questions about whose life is worth saving — and whether a child with complex special needs might be considered as deserving of a donor kidney as any other child.
Medics advised Amy, 45, to take William home and instead offered ‘comfort care’. He was given at most 12 months to live when the dialysis keeping him alive was expected to stop working.
But Amy decided to fight tooth and nail to give her adored son a second chance of life, no matter how slim.
Today, mother and son are celebrating a reprieve at their home in Lancaster, with tears of disbelief and joy.
Last week, the Court of Protection ruled that the kidney transplant should go ahead — despite doctors from Royal Manchester Children’s Hospital arguing it was ‘not in William’s best interests’.
‘The past few weeks have been horrendous, a complete hell, not knowing if William would be given this chance to live or not,’ says Amy, in her first interview following her victory.
‘It felt like a death sentence when the hospital first told me he wasn’t suitable for a kidney transplant. I have loved William for 17 years and, for me, death was just not an option. Now it feels like William has been thrown a lifeline. Pictured: William and Amy
‘It felt like a death sentence when the hospital first told me he wasn’t suitable for a kidney transplant. I have loved William for 17 years and, for me, death was just not an option. Now it feels like William has been thrown a lifeline.
‘I am overjoyed, but I can’t help but think that had William been a neuro-typical child he would have been offered a transplant, no questions asked.’
Normally, cases heard by the Court of Protection — which rules on behalf of those who lack the mental capacity to decide their own medical care — are subject to reporting restrictions, so it’s impossible to know how rare Amy’s victory is.
The 1989 Children’s Act makes it clear that where a child is at risk of harm, the state can and should intervene. If a public body disagrees with the parents’ choices, they must go to court in order to override this parental responsibility.
Usually, we only hear of the tragic High Court rulings that involve gravely ill babies — like 11-month-old Charlie Gard — and the withdrawal of life support. In 2017, there was a worldwide media storm when Charlie’s parents fought to take their severely brain -damaged son to the U.S. for experimental treatment.
At last week’s four-day hearing in Liverpool, Amy was every bit as passionate as Charlie’s parents when she begged the judge to allow William (pictured), who suffers from Steroid-Resistant Nephrotic Syndrome, a potentially life-saving kidney transplant
But the High Court ruled in favour of his doctors at Great Ormond Street Hospital, who argued the prognosis for Charlie was bleak and he should be allowed to die with dignity.
At last week’s four-day hearing in Liverpool, Amy was every bit as passionate as Charlie’s parents when she begged the judge to allow William, who suffers from Steroid-Resistant Nephrotic Syndrome, a potentially life-saving kidney transplant.
Wiping away tears, she told Mrs Justice Emma Arbuthnot: ‘I just think he deserves a chance. I understand the risks, but William’s voice needs to be heard. I’m here because I think he deserves a transplant. I’m not under any illusion it might not work, but he just deserves that chance.’
The court heard that though there is a 50/50 chance of William’s kidney disease returning even after transplant surgery, if successful, he could live into his 60s.
The hospital argued, however, that surgery had a 20 per cent chance of success, possibly requiring further transplants — and, therefore, was not worth the physical and psychological risks involved. William’s special needs meant he’d have to be sedated and put on a ventilator after surgery, because he’d struggle to lie still during post-op plasma exchange therapy, and to prevent him potentially ripping out catheters.
This — they argued — exposed William to the threat of infection and sepsis, while potentially causing him to suffer psychiatric harm and Post Traumatic Stress Disorder.
Mrs Justice Arbuthnot, however, ruled that a transplant was in William’s best interest and praised Amy, saying she was ‘struck by her dignity’ and ‘the way she had fought for her child every way she could’.
But Amy believes it was William who clinched it for them, with scenes that echoed the 2018 film The Children Act, starring Emma Thompson as a family court judge who has to decide the fate of a young Jehovah’s Witness.
Just as Thompson’s character, Fiona Maye, speaks to a 17-year-old called Adam, who is refusing a life-saving blood transfusion for leukaemia on religious grounds, so, too, did Mrs Justice Arbuthnot speak to William via video link to help her reach a decision.
The judge told the court: ‘It is very clear he [William] enjoys the life he leads, playing games and doing odd jobs, going to school and being at home with his family.’ While praising the ‘exceptional’ medical care William had received and acknowledging ‘risks are present to William whichever pathway is taken’, she said she had to make her decision by ‘putting myself in William’s shoes’.
Mrs Justice Arbuthnot, however, ruled that a transplant was in William’s (pictured) best interest and praised Amy, saying she was ‘struck by her dignity’ and ‘the way she had fought for her child every way she could’
‘It’s a case of what’s the least bad decision for William. Although a transplant will increase his suffering in the short-to-medium term, there’s a chance for William of long-term survival.’
Praising his doctors, the judge added: ‘It was clear the clinicians had been agonising over what is in William’s best interests.’
Nevertheless, Amy thinks she knows why Mrs Justice Arbuthnot sided with the family. ‘I think the fact the judge spoke to William affected the outcome because she saw him as a person.
‘She told me William was lovely and it was a pleasure to meet him. She said he was so full of life, and that was so lovely to hear because it has felt I have had to fight for him all day, every day, since he was a baby.’
She’s not alone. Since reading about William’s plight, more than 50 people have offered one of their own kidneys, as a living donor, if they are a match.
‘So many people have been touched by William’s story. They can see what a wonderful young man he is,’ says Amy. ‘We’ve had lots of people come forward in the hope they are the crucial donor.’
There is no mistaking the pride in Amy’s voice when she talks about her son. Many parents of children with complex special needs will sympathise with the struggle she has faced over the years. Pictured: Amy and her solicitor outside court last week
‘I’d give one of my own kidneys, but I am not a match. My daughter Ruby wants to donate one of hers, but at 15 she’s too young.’
There is no mistaking the pride in Amy’s voice when she talks about her son. Many parents of children with complex special needs will sympathise with the struggle she has faced over the years.
Her determination is all the more remarkable given that Amy, who underwent surgery to have a pacemaker fitted last year, is also carer to her disabled partner of 21 years, the father of William and his sister Ruby. He is a double amputee who lost both legs aged 18 to bacterial meningitis, which meant Amy had to shoulder most of the stress of the court case alone.
Certainly, Amy admits, there have been times when she has felt — rightly or wrongly — a lack of understanding of William’s disability has unfairly coloured the way others perceive him. A breech baby, born by Caesarean section, William seemed a happy, healthy infant until the age of one, when his normal development seemed to inexplicably reverse.
He was non-verbal and prone to tantrums, and his mother desperately sought answers from medical professionals. It would take seven years before William was diagnosed with autism and ADHD.
Certainly, Amy admits, there have been times when she has felt — rightly or wrongly — a lack of understanding of William’s (pictured) disability has unfairly coloured the way others perceive him
‘When a child looks as if there is nothing wrong with them, people can be very quick to write them off as just naughty,’ says Amy, who also has an older son, Levi, 25, from a previous relationship.
‘Yes, he can be draining, but I adore him and he enjoys life as much as the next child.’
It was in late 2019 when a routine blood test revealed that William had the rare kidney condition focal segmental glomerulosclerosis, where scar tissue develops in key parts of the kidneys that filter our blood, and he was referred to Royal Manchester Children’s Hospital. ‘It was a complete shock,’ says Amy. ‘The doctors told us it wasn’t genetic, just bad luck.’
Given William’s learning disabilities, he was offered dialysis at home to avoid the stress of a hospital environment, which he found frightening and led to challenging behaviour.
Indeed, Amy says she often came to dread the occasions they had to take William to hospital.
Given William’s (pictured) learning disabilities, he was offered dialysis at home to avoid the stress of a hospital environment, which he found frightening and led to challenging behaviour
‘William had never been a hospital inpatient before, so it was really tough for him and sometimes he would kick off and scream and cry because he didn’t understand what was happening,’ says Amy. Sometimes, in his distress, William tried to rip off plasters or pull out catheter lines vital for his life-saving treatment.
On occasion, the Court of Protection heard, Amy felt some medical staff lacked understanding of his disabilities and struggled to respond appropriately.
The court heard that hospital security was sometimes called on to restrain William, much to his and Amy’s distress.
‘Sometimes it felt as if my son was treated more like a Saturday night drunk than an ill child with disabilities,’ she says, voice bristling with indignation. ‘He just needed time to process things.’
Early last year, when a kidney transplant was first discussed, Amy agreed with doctors that the only way William could get through post-op plasma exchange was by being sedated for up to 14 days, despite the risks involved.
Early last year, when a kidney transplant was first discussed, Amy agreed with doctors that the only way William (pictured) could get through post-op plasma exchange was by being sedated for up to 14 days, despite the risks involved
Patients normally receive the treatments for four hours at a time, up to 12 times in a fortnight, after a kidney transplant. But William was considered incapable of staying completely still with medical equipment attached to his body.
In September last year, William was admitted to hospital to treat an infection and Amy recalls: ‘A doctor I’d never seen before took me into a room and she said to me: ‘The ward is divided; we think that maybe you should consider comfort care.’ She explained that palliative care meant stopping all treatment.
‘I had to get out of the room because I couldn’t believe what I was hearing. So then they took it to a multi-disciplinary panel hearing the next day and I begged them to continue dialysis, I couldn’t speak for crying.
‘I said: ‘Just give him a chance. Don’t send him home to die.’ I begged them and they agreed. The next day he was put on the kidney transplant list. But just two weeks later, another doctor phoned me and said: ‘Maybe you need to think about plan B,’ and started talking about palliative care again.
‘I didn’t agree and I was never going to agree, so they referred the case to the Court of Protection to decide. I don’t know what I would have done if the judge hadn’t given him this chance.’
Amy’s solicitor, Liz Davis, from law firm Irwin Mitchell, said after the ruling: ‘This is an incredibly sensitive case which has prompted a really important discussion not only about William’s care, but also about the wider issue of providing medical treatment to people with autism and learning disabilities.’
Now, Amy is praying the transplant can take place as soon as possible. And what does William think? ‘He knows he needs medical treatment to stay alive, so when I told him, he just said: ‘I’m so, so happy,’ ‘ says Amy. ‘He just wants to live.’ Pictured: Amy outside court last week
As for Manchester University NHS Foundation Trust, Toli Onon, Joint Group Medical Director, said: ‘We welcome the clarity this decision brings for William, his family and our clinicians. The Trust asked the Court of Protection to make today’s judgment because of how unusual, complex and risky the situation is.
‘William has a rare condition affecting his kidneys, and each treatment option had its own risks to his health and well-being. That’s why we asked the Court to make this difficult decision, and why the judge noted that she respected our approach to establishing what’s best for William.’
A spokesman added: ‘We recognise that this is a very difficult time for William and his family and we will continue to support them following the judgement.
‘Our teams are very experienced in caring for children with autism and have supported children with autism, ADHD and learning disabilities through transplants previously. We reject any allegations of discrimination, and there was no suggestion of this in the court’s judgement, which involved extensive consideration of all of the evidence from William’s family, independent experts and our clinicians.’
Now, Amy is praying the transplant can take place as soon as possible. And what does William think? ‘He knows he needs medical treatment to stay alive, so when I told him, he just said: ‘I’m so, so happy,’ ‘ says Amy. ‘He just wants to live.’
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