‘Brave boy deserves a gold medal’
AMAZING COURAGE OF BOY WHO HAS ENDURED 32 OPS BUT IS NOW ENJOYING ACTIVE LIFE
A NINE-YEAR-OLD boy who told his mum he “wanted to go to heaven” because of endless suffering caused by a rare disorder is taking on a new challenge after enduring 32 operations.
Aarron Higgins has endured more than most adults could ever imagine, but now he is going for gold at the Transplant Games.
Mum Jacqueline said: “He is a very brave, special boy and just wants to be normal.”
Aarron is aiming for success to bring home a medal from the games.
HE has endured more than most adults could ever imagine. A liver transplant, multiple bowel resections and the side effects of a rare syndrome have meant Aarron Higgins has gone through 32 operations.
At one point the nine-year-old told his mum he had endured enough, saying: “Mummy, I want to go to heaven. I can’t do this any more.”
But now the amazing schoolboy is gearing up for this week’s Transplant Games – and has his eye on a medal.
Mum Jacqueline, who has been a constant presence at her boy’s side, said: “After all he’s been through, he just wants his new life, he just wants to be normal.
“Through it all it was him that kept us going. He’s a very brave, special boy.”
As told in the Evening Times in 2011, Aarron suffers from Alagille syndrome, a rare disorder that affects his liver and made him itch as though he was being bitten by thousands of mosquitos.
The unbearable itching stopped him sleeping and so he could be awake for 36 hours straight.
Aarron wouldn’t eat and so had to have a PEG feeding tube straight into his stomach.
His heart was enlarged, which caused him to become hypoxic – deprived of oxygen – and this would make him pass out
As well as this, he had bradycardia, where his heartbeat would slow down.
Aarron’s liver cannot make Vitamin D so at the age of six he also developed osteoporosis and around the same time he was also diagnosed with Asperger’s syndrome, a type of autism.
Jacqueline said: “With the bradycardia you could see his colour changing when he lay down so I had to check on him every two hours to make sure he was OK.”
Eventually the family had a heart monitor, a blood pressure monitor and a SAT machine at home.
The then-Yorkhill Hospital did not have the facilities Aarron needed and so he began to be treated at King’s College Hospital in London.
Jacqueline and Aarron made dozens of journeys back and forth.
Aarron needed a liver transplant to permanently cure his condition and he was under transplant assessment for three years.
Jacqueline, from Baillieston, said: “Your phone’s like a bar of soap. Every time it rings you go to grab it and you’re so nervous it flies out your hands. Then half the time it’s PPI.
“You weren’t allowed to go more than 20 minutes from the house in case you get the call so it affects your whole life.”
It was third time lucky for the family but each false call meant a trip to London by air ambulance only to be sent home again.
Jacqueline said: “The first time there were buses mounting the kerb outside Buckingham Palace to let us past. The second time was more re- laxed. I was more scared the third time because I thought ‘This is going to be it.’”
The third call came on December 19, 2016. In the end, Aarron’s liver transplant was a success but he ended up being in King’s until March 29 before a further month in Glasgow Royal Children’s Hospital after a series of severe bowel problems.
Aarron went for surgery at 11.45pm on December 19 but at 4.30am surgeons halted the operation to have a full team meeting as the outside of his liver was healthy and could be used for another transplant.
In the end, doctors decided not to go ahead with the second transplant and Aarron was in theatre until 1pm the following day. They were unable to close Aarron’s abdomen because the swelling was too severe.
A few days later Aarron required surgery to remove 15cms of bowel, meaning he was in Intensive Care Unit (ICU) then the High Dependency Unit (HDU) before going back to the ward.
Aarron kept being sick and was unable to walk. It turned out his bowel had twisted and so he was taken in for another surgery to remove a further 15cm. But Aarron kept being sick and this burst the stitches in his stomach, causing him to haemorrhage for 12 hours. Aarron was given 14 units of blood while medics wait- ed for an operating theatre to be free. Jacqueline said: “They brought a blood warmer into the room and a nurse used a 20 inch syringe to put blood directly into his Hickman line.
“We had to use bath towels to mop up the blood. I was covered from head to toe in blood. At 4pm they took me out of the room because he was going in front of my eyes.
“The nurse said she had never seen a bleed like it. He was three hours in theatre and they used surgical glue to put him back together.
“After this he had about nine days of screaming. He couldn’t walk. He said to me, ‘Mummy, I want to go to heaven. I can’t do this any more.’”
Following this, Aarron also had a
colon obstruction, meaning more surgery. Medicine to sedate him was making him ill and so he spent three days on a ventilator wide awake.
Jacqueline said: “Aarron would write, ‘I’m missing mummy, go get mummy’ on his iPad so I was by his side all the time.
“Because of his Asperger’s syndrome he found being in the hospital very difficult with all the noises so we found special headphones to try to keep him comfortable.” During his ordeal Aarron had play therapy to try to help him understand what he had been through.
As he began to recover it was found that Aarron’s colon had become stuck to his abdominal wall so surgeons were unable to close his body.
His abdomen ruptured, which meant a further night in ICU. Doctors discovered a shell called an abdominal cocoon had formed around the bowel where surgery had been performed, which is incredibly rare.
In a further operation, surgeons took his whole bowel out and checked every inch before taking the cocoon off.
It took 14 days for the bowel to begin working again, during which time doctors worried Aarron would need a bowel transplant. Finally, after 32 operations and intense physiotherapy, Aarron walked for the first time on March 22, a birthday present to his aunt Sandra.
As well as praising the “amazing” King’s hospital, Jacqueline also says Aarron’s school, Swinton Primary, was incredible.
Aarron’s liver came from a 36-year-old man and Aarron said it is “loving being in my tummy”.
Jacqueline said: “He might be home but I feel as if I have not stopped yet.
“One of the other liver mums said she went to work one day and fell to pieces.
“Some days I do feel as though I could greet all day and never stop.”
Remarkably, Aarron is now gearing up to take part in the British Transplant Games this week where he will compete in the obstacle course and five-a-side football. Some 13 members of his family are running the donor run.
Aarron plans to run the 50 metre sprint on Sunday and has eyes on first place. Jacqueline said: “It’s going to be tears for souvenirs at the end.”