‘Boy without a bellybutton’ is on road to recovery from rare condition

Two-year-old Jack Lewis with mum Sarah Lewis.
Two-year-old Jack Lewis with mum Sarah Lewis.

Bright, full of life and with a smile that would light up a room, you would never guess the terrifying ordeal little Jack Lewis has been through.

The two-and-a-half-year-old was born with the rare abdominal condition exomphalos major, which resulted in three of his internal organs being born outside his body.

It was a massive shock when we found out he had the condition

Sarah Lewis

Jack has since been through four operations and, after complications arose in one of them, parents Sarah and Gary Lewis, of Stirling Avenue, Jarrow, feared they were about to lose their beloved son.

Life has been a battle for Jack since he was born with his bowel, intestines and liver outside his body, but he is now well on the road to full recovery.

His parents were informed their baby would have the condition at the 12-week scan, and Jack went under the knife for the first time when he was aged five months, as two hernias were operated on.

Complications with a further operation to place the organs inside Jack’s body led to the youngster having to fight for his life, while he had to undergo more surgery when his bowel came back through his stomach.

Now, though, Jack, who goes to Stanley’s Nursery at Bede Children’s Centre, in Inverness Road, Jarrow, is back on the road to health after a ‘frightening’ ordeal.

Mum Sarah, 32, said: “It was a massive shock when we found out he had the condition. It’s quite rare, and the hospital said they could see two to five cases a year, but then not see another one for five or six years.

He has had four surgeries so far, and the second of those went a bit wrong. He was very poorly, and we nearly lost him, but thankfully they got him back on the road to health.

“It was very frightening, and he will have to have another operation at some point when he’s a bit older, but thankfully he’s out of the woods now.”

Jack’s condition continues to present its daily challenges, though. Sarah added: “He’s a lot smaller than most of his friends, and is on a special diet with special requirements as he doesn’t put much weight on. He can’t keep up with his friends most of the time, but he is improving.

“It was really daunting when we found out he would have the condition, because you wanted to be excited for the pregnancy, but didn’t know how everything would go. The doctors don’t know how things are going to be until you’ve given birth, so they give you the grim outlook and worst-case scenario.”

Sarah has helped to organise a get-together for children living with the condition in London in August, and is holding a fundraiser at Hedley Hall, in Ellison Street, Hebburn, from 10.30am tomorrow, with Jack and his nursery friends involved in a sponsored scooter ride.

The money raised will be split between the children’s surgical ward at the Royal Victoria Infirmary, Newcastle, where Jack was treated, with the rest going towards the London event.

Meanwhile, she is in the process of setting up a foundation – called ‘Jack’s Journey: The Boy Without A Bellybutton’ – to give support to families.

Exomphalos is thought to affect just two in every 5,000 children born every year, according to NHS statistics.

It is a weakness of the baby’s abdominal wall where the umbilical cord joins it, which occurs when the abdomen does not develop fully while in the womb.

In pregnancies, the intestine develops inside the umbilical cord and usually moves inside the abdomen after a few weeks, but in exomphalos, the intestines and sometimes other organs remain inside the umbilical cord, but outside the abdomen.

A cause for the condition – which leads to organs being covered in a membrane outside the body – is not known, and it can sometimes be associated with other problems.

Jack Lewis was born with exomphalos major, which is when the opening is greater than 4cm and/or with the liver inside the cord, while exomphalos minor is when the opening is less than 4cm, and only containing the intestine.

Treatment is needed soon after birth, and the outlook for those born with the condition varies depending on the size of the defect.

As the condition is so rare, Jack has not come into contact with any other children living with it, which is why mum Sarah was so keen to arrange the get-together in London in August.

She said: “The event in London will be the first time Jack will be able to meet children with the same condition as him.

“The get-together should benefit all of the children, because the condition is so rare and it would show them they are not the only one who has been through it.”