Twins separated by hospital shared a womb but want to share room

He’s spent most of his 13 years in hospital, had 65 operations and faces a liver transplant in the future, but this tough teen keeps defying the odds and his twin brother just wants him home.

The Giles family with the twin when they were babies.

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Connor Giles is a teenager with a simple wish — to finally share a bedroom with his twin brother Lleyton. They slept together in the womb but, for the past 13 years, hospitals have kept them apart as Lleyton has survived 65 operations.

Connor wants nothing more than to have his brother home.

Twin brothers Lleyton (left) and Connor Giles at The Children’s Hospital, Westmead, where Lleyton has spent countless time having treatment. Picture: Sam Ruttyn

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“I just wish we could share a room, or play on the same football team or even swim in a pool together,” he said.

But Lleyton still faces a liver transplant and hopefully a bowel transplant in the next year or so. The twins were born too soon and too small with Lleyton just 500g, the size of a tub of butter and Connor only 620g.

While Connor managed to dodge the many dangers for babies born 12 weeks premature, Lleyton battled almost every one.

“I can play sport and he can’t, I can go swimming and he can’t, I can have a sleepover and he is in hospital and he doesn’t complain about anything. He should be jealous and I know I would complain,” Connor said from his Mt Druitt home.

The twins were born at 28 weeks and Leyton, who here is 17 days old, weighed 500g.

In the Clancy ward of The Children’s Hospital, Westmead, where he has spent the majority of his life, Lleyton responds with a deadpan: “Yeah, I’m pretty tough.”

Lleyton had his first operation, heart surgery, at just 17 days of age.

Then he had a condition called necrotizing enterocolitis, which kills off the bowel and he had all of his large bowel removed.

He can eat but, with no intestines, he can’t absorb nutrition, so his survival is reliant on Total Parenteral Nutrition, a formula fed directly into his veins.

But that has its own problems. He has survived more than 50 life-threatening blood stream infections, his latest just last week.

Lleyton and Connor Giles when they were one.

“I’ve been told so many times he’s not going to make it and the doctors tell me they don’t know why he is still here. He is a living zoo, he’s had so many infections but I just think he is really, really strong-willed,” mum Rebecca Hanson said.

As for the scars all over his body, Lleyton said he has lost count. “It’s too hard and there too many,” he said.

Wes Giles said his son’s resilience was an inspiration.

“Even when he has been cut open from end to end, he never whinges and I’m just so proud to be his father,” Mr Giles, 40, said.

Lleyton spent the first five years of his life in hospital and has only been out a week here and there ever since.

It is his second home and even Connor and their four other siblings have attended the hospital school to make life a little easier.

“We’ve lived at the hospital, eaten meals together there and had every holiday in the Starlight Room, our whole life was basically based there when the kids were younger,” his mum said. “This year we’ve only had five days at home and each year it is about 10 months a year we are here.”

Lleyton (left) and Connor would love to be at home together, sharing a bedroom. Picture: Sam Ruttyn

Now Lleyton is facing his biggest challenge yet.

The nutrition fed through his veins and keeping him alive has also caused liver disease and in the coming year or two, Lleyton will require both a liver transplant and hopefully a bowel transplant.

“He will go on the transplant list. He is the strongest, most outgoing person you will ever meet,” Ms Hanson said.

Mr Giles said: “At five they said he only had 18 months to live and here he is 13, so if anyone can pull through, it’s Lleyton.”

Connor said: “I just want him to get better and come home,” Connor said, while Lleyton added: “I want to come home, I get to play on my PlayStation.”

March is The Children’s Hospital Westmead Bandaged Bear Appeal to ensure lifesaving care continues for sick children and their families.

Visit bandagedbear.org.au. To give back to the hospital that saved Lleyton’s life, the family is taking part in the 2019 RunWest fun run on March 31: runthewest.com.au

Originally published as Twins separated by hospital shared a womb but want to share room