The two meet again after 20 years – an amazing transplant surgeon and a grateful young patient with whom we set a world record that still stands today.
When Professor Mohamed Lela first found Baeven Stoke in 1997, she was just five days old and on the brink of death.
She was born with a rare genetic disease that made her addicted. liver .
Parents Ita and Jurgen were already grieving after seeing two of their sons die from the disease.
Now it looked like they might lose their third child within three years.
But Professor Lela had other ideas. A matched donor liver was readily available. So he made the pioneering clinical decision to make Beben the youngest patient to receive a liver transplant.
This microsurgical procedure has become a hot topic all over the world.
Twenty years later, their reunion took place in the ward next to the theater at King’s College Hospital in London, where it all happened.
Professor Lera, who has performed hundreds of liver transplants during his 30-year career, said: If we hadn’t operated on her, she would have died. I didn’t have time to think about the risks.
“And I had no idea she would be the youngest person in the world until a few weeks later when someone suggested it was a possibility.”
Ms Beben, a law student, said: It would not have been possible without the parents of the tragic boy who donated his liver and the skills of Professor Lela and his team. ”
Looking at her, the smiling professor said: “She is vibrant and healthy, which is a great advertisement for the longevity of her transplant.
“Patients are worried that their livers will be exhausted after five or 10 years. If we can avoid the rejection problem, the future is good.”
But in 1997, the future looked bleak for the Stotke family.
At the time, her 30-year-old mother, Ita, and her 33-year-old husband, Jurgen, already had a healthy 5-year-old son, Aoduba.
But her next baby, Lucas, and the following year, Reuben, died within weeks of neonatal hemacromatosis, a deadly buildup of iron in the liver.
Baby Baben, who was born two weeks early at a maternity hospital in Dublin, also had this condition.
Jürgen, 53, a computer engineer, said: “The only way to know if you have a disease is to do a test in the third trimester.
At first everything seemed fine, but a week before Baeven was born, blood tests detected hemochromatosis. ”
By then, her parents knew her only chance was at King’s College, London.
After losing baby Lucas, they discovered online that there might be a treatment to remove toxic levels of iron in the hospital.
So, when her second son Ruben was diagnosed in utero, Ita was admitted there to give birth, but he died from the disease. sepsis 4 weeks after the onset of complications. Doctors in Dublin consulted King’s with Beven.
She was transferred to London in an incubator, just as the liver of a 10-year-old boy who had died in an accident had become available.
Professor Georgina Miele Vergani, 71, King’s liver pediatrician who treated Ruben, said: “We knew we had to try something different to avoid further tragedy for this family.” .
Ita said: “I was told that if I agreed, Beven would be heading to the theater within four hours.
“We had lost two young boys, so we knew we had to give them a try at something different.” This complex surgery involved inserting a donor liver into an eight-minute surgery in a two-hour surgery. The animal was dissected to the size of 1, so it would fit into Mr. Beven’s tiny 6-pound abdomen.
While the donor liver was being prepared, a second team of surgeons was removing Baeven’s affected organs.
King’s College had pioneered splitting and sharing a donor liver between two recipients, but this was the smallest liver ever transplanted.
Professor Rela used microsurgery with image-enhancing glasses to connect small blood vessels from the donor organ to Baeven’s circulation. “She was so small that we anticipated potential setbacks for her, but there were none and being small was probably an advantage for her,” he said.
“She has never had a rejection reaction, but that’s because her immune system wasn’t fully developed at the time and her body couldn’t accept the ‘foreign’ liver. It could be. Now we are so proud of her and what we did.
Mr. Beben said: It’s great to be back on the ward you were in after your transplant. ”
After Beven was discharged from the hospital, the family remained in London for several weeks to be near King.
Ita added: “She was growing up so fast that it was hard to believe that she was so close to death.
“We consider ourselves lucky. Neonatal hemacromatosis is rare and not much is known about it.”
Mr Beben, who met other small transplant patients during the King’s visit, was an avid canoeist, swimmer, walker and hill climber, and did well at school, winning a place to study law at Trinity College, Dublin. Obtained.
Ita said: “We think often of the brave family of the deceased boy who agreed to donate his liver. Like some relatives, we have never written to them. At the time, we found it difficult because of the publicity surrounding this incident.
“These donations are anonymous and we don’t know anything about the families. We would be happy if they would like to exchange letters or meet us.” Ita, Jurgen , Mr Baeven passionately believes that laws in Ireland, England and Scotland should provide for consent to donate, and is championed by the Daily Mirror newspaper.
“Someone saved my life with my liver, so if something happens to me, I want to give that liver to the next person in need,” Beben said.
