The amazing little South Tyneside boy who was born with three organs outside his body - but just look at him now!

Super student Jack Lewis is achieving miracles – just seven years after he was born with some of his internal organs outside of his body.

Monday, 13th July 2020, 5:12 pm
Two-year-old Jack with his mum Sarah in 2015.
Two-year-old Jack with his mum Sarah in 2015.

The Jarrow youngster came into the world with the rare condition Exomphalos Major which only affects two in 5,000 children, according to NHS statistics.

He was born with his bowel, intestines and liver outside of his body and he’s been in and out of hospital 50 times since.

Jack, now seven, has had regular surgery ever since he was five months old, but this amazing young boy has fought back in style and now he has won a bursary at Newcastle School for Boys where he starts in September.

Jack and mum Sarah in 2016.

No-one could be prouder than mum Sarah and dad Gary. Sarah praised her little fighter who has always done his best to achieve.

"We always knew he was bright enough,” she said. “Because of Jack’s hard work and determination, and can-do attitude, he was awarded a place.”

She said: “He has improved massively. He has been in hospital about 50 times and it is like a second home to him.”

Yet despite a constant battle for health, and so many hospital visits, Jack has been a dedicated student.

Jack Lewis in his new school uniform.

"He has only missed six months of schooling and he has never fallen behind,” said mum. "When he is in hospital, he is quite happy to do schoolwork.”

Even during the lockdown, Jack sets himself a daily schedule. He studies on a morning and then keeps up his online dance lessons with the VA Performing Arts Tyneside.

"He will tell me that it is school on a morning, and then rest his brain and exercise his body on an afternoon,” said Sarah.

His lessons are paying dividends because he has managed to do the splits.

Jack in hospital when he was a baby.

Just as importantly, though, his self confidence is soaring and Sarah thinks that’s down to the support of dance school boss Val Armstrong and her team.

"It has improved him massively,” said Sarah. She told how doctors had recommended dancing because of his problems with his abdominal muscles.

"There has been a change in his confidence and he is not so shy as he used to be. He has made new friends and he is more confident.”

Life has been a battle for Jack since he was born. His parents were informed at the 12-week scan that their baby would be born with the condition.

Brave Jack has battled for health ever since he was born.

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.

He went under the knife for the first time at five months old when 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.

He had to undergo more surgery when the bowel came back through his stomach.

In recent years, Jack has had two more operations and was poorly for a year with further bowel problems in 2018. Now, though, he is ‘doing really well,” said his mum.

She described her son as ‘like a little old man sometimes’ which she puts down to his being around adults in hospital so often.

But she said Jack was also a brilliant big brother to three-year-old Archie.

A glance at the camera from baby Jack.

News of Jack’s success was a delight for Val Armstrong of VA Performing Arts Tyneside, who said: “Jack has been with us for one term and he is such a sociable boy.

"We can’t believe the difference in him in the space of a few months. It is incredible.”

What is Exomphalos

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.

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A thumbs-up from Jack during another of his hospital stays.