The joy of seeing a life saved by the loss of my son: Tom was just 22 when he died – but organ donation meant he helped an incredible 50 people. Now, in an uplifting interview, his mother meets one of the lucky ones
- Only hope for Lubna Siddiqui’s critically-ill toddler, Fatima, was a liver transplant
- Lisa Wilson’s son, Tom, 22, saved her life through organ donation after he died
- Fatima was one of an extraordinary 50 people Tom saved or helped that day
Lisa Wilson with Fatima Siddiqui, who benefited from organ donations given by Lisa’s son Tom
Lubna Siddiqui and Lisa Wilson share an extraordinarily powerful bond that stretches right to the heart of motherhood.
When the only hope for Lubna’s critically-ill toddler, Fatima, was a liver transplant, Lisa’s ‘gorgeous, bright as a button’ son, Tom, 22, saved her life through organ donation after he died on December 8, 2015, following a tragic accident playing hockey.
Fatima was one of an extraordinary 50 people Tom saved or helped that day. Although organ recipients and their families don’t usually meet their donors, Lubna was desperate to thank Lisa personally for saving her little girl’s life; and equally Lisa, 56, wanted to meet the child Tom’s liver had saved.
The two women are meeting for the fifth time in a flat in Kennington, South-East London while Fatima, now six, and her sister Sophie, three, play.
As Lubna makes tea and hands round cake, Fatima climbs onto Lisa’s lap and snuggles in, cuddling the soft unicorn Lisa gave her when they met for the first time this summer.
‘Nothing will ever assuage the devastation of Tom’s death, but knowing that a part of Tom is keeping Fatima alive — there aren’t words to describe that feeling,’ says Lisa.
Pictured with Fatima (centre) is Tom’s mum Lisa (left) and Fatima’s mum Lubna (right)
Fatima was a healthy, happy baby until her parents started to wean her at six months. ‘She vomited every ounce of solid food I gave her,’ recalls Lubna, 31, a chemical engineer who’s married to Zain, 36, a railway technician.
‘Our GP thought it was a bug, but when she kept losing weight, it became obvious something else was wrong.’
Blood tests confirmed Fatima had neonatal ichthyosis-sclerosing cholangitis (or NISCH syndrome), a rare liver disease caused by a genetic mutation that leaves the liver unprotected from toxic substances found in bile, the fluid which aids digestion and eliminates waste products.
There is no effective treatment: As the liver becomes progressively more scarred, it eventually fails — most children need a transplant.
Tom Wilson (left) and his father Graham. Tom died aged just 22 and his organs have been donated
Two years later, Fatima was put on the transplant list after her liver deteriorated so much that she was coughing blood. The bleeding was caused by Fatima’s enlarged liver putting pressure on her entire digestive system.
As the small veins supplying her oesophagus were squeezed, they ruptured.
‘Fatima had been at the top of the transplant list since August 2015 — we understood that her condition was very serious but when fresh blood appeared in her nappies, I realised we were living on borrowed time,’ says Lubna.
Fatima (pictured) was one of an extraordinary 50 people Tom saved or helped that day
In December that year, Fatima started vomiting a large amount of blood and she had to be rushed by ambulance to King’s College Hospital, where she had already spent much of her short life.
Doctors battled to control the bleeding while her parents willed her to live just a little longer.
There was only one procedure which would temporarily halt the bleeding, says Lubna. ‘Surgeons applied bands around the veins to seal them and prevent blood flowing into her stomach. But as the bleeds became stronger and more frequent, the bands didn’t last and the veins would rupture.’
‘Her liver was so large and uncomfortable, she couldn’t sit or walk for long,’ adds Lubna. ‘No one knew how long she would last without a new liver.’
All her parents could do was hope for a miracle. A week later, it came, but at devastating cost to Lisa, her husband Graham and daughter Pippa, then 20.
Tom — a good-looking, laid-back 22-year-old with a beautiful smile and quick sense of humour — had started his first job as a trainee property surveyor. ‘He was full of it,’ says Lisa. ‘Dream job, dream boy. He was just gorgeous.’
Lisa, a retired PE teacher, recalls sitting in the kitchen at home in Essex, saying to Graham: ‘Life is perfect — how did we manage this?
‘Tom and his younger sister Pippa were doing well. Graham was about to retire as a hockey columnist on a national news-paper and we planned to travel. We couldn’t have been happier.’
Their seemingly perfect life was torn apart on the evening of December 9: Tom was hit on the head with a hockey stick while training.
He was taken to hospital but a scan of his brain showed such extensive bleeding, there was nothing doctors could do for him.
When Lisa spoke to Good Health in December 2016, less than a year after Tom died, she struggled to put into words the devastation of that night — and the events that followed.
Eight weeks after Tom’s death, Graham was diagnosed with a brain tumour and died in hospital aged 63, from sepsis. His last words to her were ‘to keep Tom’s memory alive’.
‘That was probably the only thing that was keeping Pippa and I going,’ says Lisa.
It had been Graham, sitting next to Tom’s bed in intensive care, who had very gently, raised the difficult subject of organ donation. Although Tom’s brain was irreparably damaged, his other organs and tissue, including his skin and the long bones in his legs were in perfect condition.
‘I was horrified at the idea of anyone cutting up Tom’s body, but Graham was right to mention it,’ says Lisa. ‘When a nurse told us that Tom had signed up to the organ donor register at university, I felt an enormous burst of pride.’
Although personal details about organ donors and recipients are always confidential, the family found enormous comfort in knowing that Tom’s heart had gone that same day to a 50-year-old man, his lungs to a 21-year-old and part of his liver to a two-year old little girl who had been ‘very close to death’.
That little girl was Fatima, who by then had weeks to live. Lubna remembers vividly the moment she got the call from the transplant co-ordinator to say a liver had become available: ‘I felt relief, mixed with dread.
‘Fatima’s liver seemed so massively swollen and distended that day, I remember looking at her and wondering how much longer she could carry on.’
Within half an hour, Fatima was blue-lighted to hospital for surgery, which took place at midnight that day.
‘I was in floods of tears,’ says Lubna. ‘Because I knew if this didn’t work, we’d lost her. I called all our relatives in India and across the world and everyone was praying for her.’
As Fatima recovered after her operation, Lubna wrote to Lisa through the transplant co-ordinator, telling her how grateful the family was and sending photographs of her daughter.
‘We wanted to know who saved our daughter and thank them personally,’ she says.
Lisa and Pippa knew immediately that they wanted to meet the little girl Tom’s liver had saved, and so this summer, the families arranged to meet privately.
‘I felt both excited and nervous,’ says Lisa. ‘Pippa gave Fatima a fluffy white unicorn and I had a book on butterflies. Lubna had hinted these were things Fatima liked in the letters we’d sent back and forth.
‘When we met, Fatima had a big smile on her face and was holding a beautiful pink orchid which she held out to me. It was as if they
were part of our family. I felt a sense of contentment, but I couldn’t quite make sense of the fact this adorable little girl was alive because of my Tom — and he lived on in her.
‘When we said yes to organ donation, I didn’t grasp the benefit to real people,’ says Lisa. ‘But meeting Fatima, it hit me that Tom has done something really special.’
After Tom and Graham died, deputy head Lisa took early retirement; while Lubna had to take redundancy as the company couldn’t accommodate the time off she needed for Fatima’s hospital admissions.
‘Two women, with so much to give — but any mum will say your child comes first,’ says Lisa.’
‘In a heartbeat,’ agrees Lubna. Fatima, who began Year 2 in September, now takes immuno-suppressant drugs to prevent her body rejecting her new liver, ‘but otherwise leads a normal life,’ says Lubna. There has been sad news, too. The 21-year-old girl with cystic fibrosis who received Tom’s lungs died six months after her operation.
‘When the transplant nurse told me, I felt part of me died, too,’ admits Lisa.
This summer, The Donor Family Network commissioned Tom’s Baton — a sculpted baton held by two bronze hands — and presented it at the British Transplant Games in Newport.
It travelled around the UK in the lead-up to the World Transplant Games in Newcastle.
Fatima began the relay at The Royal London Hospital and Gordon Paw, 60, who received Tom’s heart, was in Newcastle to bring it to the end of its journey.
The hardest day of the year for Lisa is December 8, the day of Tom’s accident. ‘I would do anything to have him bound into the kitchen again,’ she says.
‘But 50 patients were saved by Tom’s organs and that is incredibly comforting.’
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