Our little girl was dying... all we wanted was some compassion
He’s a hospital consultant, she’s a former doctor. Even they felt helpless
ZAI NAB ABBA SI’ S bedroom remains untouched since the heartbreaking day ten months ago when the terribly ill six-year-old girl died in hospital. A Disney poster adorns the door, two birthday cards, both featuring princesses, are still on display and Tigger, her favourite soft toy, sits on a shelf opposite her empty bed. ‘She was the light of our home,’ her griefstricken mother Aliya told The Mail on Sunday. ‘ When she passed away it was like the soul had been taken from our house. All of us were here but the home was empty.’
What made Zainab’s death in September so unbearably painful for Aliya and her husband Rashid, who are both doctors, is that her final weeks were overshadowed by a bitter dispute with medical staff over whether to withdraw life support – so bitter in fact that it culminated in the violent arrest of Rashid and his forced removal from his dying daughter’s bedside.
For much of her short life, Zainab was only able to communicate with her father by gently squeezing his hand. Indeed, she was holding one of Rashid’s fingers as a police officer shouted ‘leave go of your daughter’ before dragging him from her.
With tears streaming down his face, Rashid, 59, a respiratory consultant at a different hospital to the one Zainab died in, said he still suffers ‘flashbacks’ of the harrowing incident.
‘As I was being pulled off her bedside she was holding my finger,’ he said. ‘ One officer was squeezing my wrist at the same time as they pulled me. I could feel pins and needles.
‘I fell on top of them and then they pulled me down and they were kneeing me on my lower abdomen. It was brutal.’
Aliya, 53, added: ‘It was so unbelievable. I had this feeling that I spoke but nobody could hear me. I kept saying, “You don’t understand, half an hour ago we were told that they are going to take our daughter’s tube out. She is dying.” ’
Born in June 2013, Zainab was Rashid and Aliya’s fourth child – but their first girl. Rashid and Aliya noticed their daughter was missing some key development milestones but believed she was otherwise thriving.
‘ She was very cheeky, very bright, a lovely little girl,’ Aliya said. ‘She was a bundle of joy, she really was. From the beginning she was a little fighter. She was a feisty little thing.’
But in January 2016, Zainab contracted swine flu and, after spending weeks on a ventilator, was left with respiratory complications, which she suffered from for the rest of her life. Swine flu has continued to circulate in the
UK each winter after the 2009 global pandemic.
Weeks later, Zainab was diagnosed with Niemann-Pick disease, a rare and incurable genetic disease. After this devastating development, which meant she was likely to die before adulthood, Rashid and Aliya increasingly clashed with Zainab’s doctors over her care, particularly the way her respiratory problems were being treated.
Although she lost the ability to speak, Zainab’s parents say she could still communicate by making non-verbal noises and would be in bright spirits despite being seriously ill.
Even when on a ventilator, she would enjoy watching her favourite film, Paddington.
‘And she could respond to music, she would watch her DVDs,’ Aliya said. ‘She loved having her hair washed, brushed and plaited.’
The disagreements between Zainab’s parents and her doctors intensified when she fell dangerously ill last July and was admitted to hospital for the final time. On August 16, Rashid was banned by the hospital from visiting his daughter between 5pm and 9am because it was claimed a junior doctor had felt ‘threatened and intimidated’ by him during a dispute over Zainab’s care.
Medical staff later called police when Rashid did visit, but officers calmly handled the situation and he was allowed to stay.
Three days later, Rashid and Aliya met three senior doctors in a room near Zainab’s ward, who told them they wanted to take her off her ventilator, which was providing her lungs with oxygen, and allow her to die ‘in the most caring manner’. Rashid and Aliya disagreed and a heated argument escalated when t he doctors attempted to hand Rashid a letter spelling out how his visiting hours would be restricted.
MEDICAL staff claimed Rashid pushed o ne o f the doctors as he stormed out of the meeting. He denies this. ‘My shoulder may have brushed him but then he is the one who ran after me. He first tried to stop me,’ he said.
The couple said they ‘panicked’ because they feared medical staff were taking Zainab off the ventilator while they were in the meeting. ‘It was like being hit with a sledgehammer,’ Aliya said.
Around half an hour later, four police officers and two security guards gathered at Zainab’s bedside, where Rashid, Aliya and one of their sons were sitting calmly.
They repeatedly asked Rashid
She was very bright, a bundle of joy… a feisty little fighter
She had rights, the rights of a dying child… what happened to them?
to move into a different area where they could speak to him, but he did not move. Aliya explained why her husband needed to be there – and asked, ‘Do you know what compassion is?’ But five-and-a-half minutes later chaos broke out as officers attempted to forcibly remove Rashid.
‘I thought they were in parallel, removing Zainab’s tube as well,’ he said. ‘To this day, I wake every night thinking somebody’s tightening my handcuffs and Zainab’s tube is being pulled out.’
As officers forced him to the ground to put handcuffs on him, Rashid, who had previously suffered two heart attacks, felt a crushing pain in his chest. ‘I thought, if I die, what happens to my daughter? I would never see her again and they would almost certainly carry out their threat of removing the tube. I can’t put it in words. I think the heart attack was just a physical manifestation of that distress.’
Aliya breaks down in tears as she remembers how she later asked one of her sons to visit Rashid in Accident and Emergency because she feared he would die.
‘ I wanted the children to say goodbye to their father. I thought they might not see him again.’
Rashid and Aliya obtained police camera footage of the incident last December after making a request under the Data Protection Act – but it took them weeks to build up the courage to watch it.
When she did finally view the video, Aliya was struck by the couple’s ‘sheer helplessness’ and the refusal of police to listen to their pleas for understanding.
‘I felt like I was this pathetic middle aged woman pleading with people to listen to her,’ she said.
‘I am having bereavement counselling and I tell my counsellor that this is how I feel now: I feel I speak and people can’t hear me.’
Rashid added: ‘You are speaking to a brick wall. The louder you say things, the louder it bounces back to your face.’
Following the shocking incident, the hospital trust treating Zainab
– which did not withdraw her tube during the police incident – applied to the High Court for permission to withdraw life-support treatment and move her to a palliative care regime. A two-day hearing was scheduled for September 19 and 20 but her condition deteriorated, and on September 15, Mr and Mrs Abbasi made a last ditch attempt to save her life. During two emergency telephone hearings with a judge, Rashid and Aliya pleaded for their daughter to be allowed high doses of steroids.
Their request was refused and at 10.08am the following morning Zainab died with her parents and brothers by her bedside.
In a stark sign of how the relationship between the parents and hospital completely broke down after the arrest, two security guards were posted outside the entrance of the ward.
Aliya and Rashid passionately believe t heir daughter was not terminally ill and that more could have been done to save her. ‘If that episode last year hadn’t happened, we could have carried on looking after her for many, many years,’ Aliya said.
Rashid’s arrest was the last of many flashpoints with clinicians during the final years of Zainab’s life. He was arrested in February 2019 at another hospital after it was claimed he had refused to leave his daughter’s ward and was ‘agitated’. He was later de-arrested due to concerns over his health.
The couple were also investigated by social services and police following allegations that they were ‘obstructing medical access to Zainab’.
This included claims they had changed their daughter’s medication, given her a drug that had not been prescribed and given her too much oxygen at home.
The couple have always strenuously denied the claims and say they have evidence which disproves them. The police closed their investigation last year due to ‘insufficient evidence’, while social services concluded that, while t here had been safeguarding issues, Zainab was not at ‘continuing risk of significant harm’.
The couple conceded that Rashid can become ‘animated’ but say this was due to the frustrations of their dispute over Zainab’s care.
They denied he was threatening or intimidating.
Aliya warned that other parents, who are less medically qualified than they are face similar battles against doctors determined to withdraw their child’s life support.
‘It’s a bit like if you take your car to a garage and a mechanic insists on a certain course of action. You go with the advice because you don’t know any better.
‘ Because we were both doctors we knew exactly what should be happening and we could point out when our daughter was being failed. If this could happen to us, what about other people?
‘On two previous occasions, in 2016 and 2018, Zainab was critically ill in intensive care and doctors suggested it was time to bring her off the ventilator and allow her to die. But because of our medical knowledge, we successfully challenged them and urged them to treat her with higher doses of steroids. On both occasions we were proved right.
‘This happens up and down the country every day because parents don’t know what is happening.’
Rashid, meanwhile, remains tortured by the memory of his violent removal from his daughter’s bedside. ‘Zainab had human rights. She wanted to have the closeness and the company of her parents. What happened to her human rights – the rights of a dying child?’